The Silver Lining

We had a really busy week last week.  I tried to schedule a few down days, to recoup my energy in between some events we had going on -- I'm learning to be aware of not over-scheduling things. Wednesday we had an appointment at Duke with Dr. Raja.  This is a LONG trip for us -- it is 4 hours' drive from our home to Durham.  Our appointment was late afternoon, so we packed up for staying overnight IF we decided to do that.  We stopped for lunch at Cracker Barrel, and arrived at the clinic just a few minutes early.  I was happy to be able to walk into the place on my own steam this time!  My first visit, 3 months ago, I was wheelchair bound and on oxygen 24/7. July, 2018 October, 2018 Dr. Raja was quite pleased with my progress; so were we!  I'm continuing on the same medicine regimen for the time being.  We will likely try reducing the prednisone again  in a few weeks.  She noted I had gained 5 pounds in three...

This one is short, sweet, and to the point.  Prednisone makes me crazy! It gives me some energy, but it also makes me want to peel the paint off the walls and eat it.  Seriously.  I have to practically nail my butt to the couch to stay out of the kitchen, otherwise I would eat everything in there.  UGH.   And even if I DON’T eat, the drug plumps my face and body anyway.  I feel like my neck has disappeared and my face is turning into a moonpie. Prednisone in my body screams for food.  MUST. FEED. THE. BEAST! I am drinking water by the gallon to avoid eating.  It is, apparently, a “necessary evil” at this point in my treatment.  So I will dutifully take it, like a good little girl.  Well…. BIG girl.  I will eventually be able to taper it down.  So this, too, shall pass. ***   ***   ***   ***   ***  Untethered ...

July 15-20 Sunday morning.  We were supposed to be headed to the beach for a week.  We’d been planning it for months.  Normally, I would have already had everything packed but I hadn’t had the energy or ability to even collect my thoughts about it. Just as well. I wound up in an ambulance, going back to the hospital in full Myasthenic Crisis.  I remember the paramedic reading up on MG as we rode.  He continually monitored me, spoke soothingly to me.  I squeezed the pump respirator, trying to force enough air into my lungs to breathe.  By the time we arrived at the hospital, I was too exhausted to care much.  I don’t remember much about Sunday once I was taken into the ER.  I vaguely remember a chest x-ray.  David said I was nauseous but I don’t remember throwing up.  He also mentioned that the resident doctor I had been assigned in my previous visit checked on me but I have no recollection of seeing her.  ...