Written September 10, 2010 8:47 pm

Anita had a restless night's sleep, and spiked a fever early in the morning.  She also exhibited low blood pressure and low hemoglobin levels.  She was administered with an IV Saline "Bolus" (i.e. quickly administered) and blood transfusion to address the low blood pressure and hemoglobin levels respectively.  X-ray (lung), blood and urine tests were also performed to check on the cause of the fever and low blood pressure/hemoglobin levels, results to be forthcoming in the next days.  Anita visited briefly with family members in the early afternoon, but was quite tired and rested the remainder of the day.

The results of the most recent spinal fluid test (September 9, 2010) were received back from the lab.  On a more positive note, the results of the Myelin Basic Protein (MBP) levels test showed in the normal range. a decrease from the MBP levels from the spinal tap fluid test on September 4, 2010, which were found to be higher than acceptable.  This indicates that the steroid/plasmapheresis treatment program has had the desired effect, and that the nerve demyelination activity appears to have ceased.  The treatment plan for the foreseeable future is to commence with a steroid taper program (i.e. weaning off steroids), monitor clinical neurologic progress, and protect against fevers, infections, and respiratory issues as appropriate.  We are hopeful that Anita has reached the "bottom" with this disease and is now on the road to recovery.


I've been sick a long time.  At least a month now, but it seems longer.  I lie here day after day, listening to the hum of the ventilator.  Not talking.  Not eating.  Not moving.  The lines of fatigue around John's eyes seem to get deeper everyday.  I wish it would just end.  John has cast a net to keep me from drowning.  Every time I start to go under he wills me back.  But for what?  I'm having a hard time envisioning the future.  I don't own a wheelchair.  I don't want one.  I'm too weak to even sit in one.  Does this damn ventilator have to follow me home?

I have to choose better thoughts.  I need to hope, pray, rest. With sleep there is escape. So, I close my eyes , looking for dreams of walking on the beach, searching for sea glass.  The waves keep the rhythm while the wind paints my sun screened legs with sand.  Sweat and humidity cover my body like dew on the grass. Walking in the surf, seeking sea glass.  It's like trying to find a puzzle piece. When one piece is found, another follows.  And once the finding begins, it's hard to stop.  Little tiny shells, polished pebbles all shades of brown can be mistaken for glass.  But the discriminating eye can tell the difference. Slowly.  Walk slowly. The breeze dries the ocean on my skin, leaving salt crystals behind.  I stop to cool in the surf and gaze out on the expanse of the sea.  My feet get sucked into the sand a little deeper with each retrieving wave.  It feels like I am trying to root here.  I see pelicans on patrol, dolphins playing and fish jumping.  The roar of the ocean drowns all other sounds.  The briny smell of fish and the nostalgic scent of Coppertone fill my lungs. I lick my salty lips and chew a few grains of sand which feel like small pearls to my teeth.  I promise myself I will get back here.  This place where my magic is.  The beach has persevered through many storms.  I can too.  Now...for just a little while.