Written September 12, 2010  9:14 pm

Anita had another good night's sleep last night.  She visited with various family members and friends throughout the day.  A highlight of the day was a visit from a therapy dog (labradoodle) from the Delta Society Pet partners, which Anita quite enjoyed.

Dogs.  I've always shared my life with one. My first was a beagle mix who watched over me as I grew up.  I got her when I was just 5 and we shared many adventures. She taught me to notice nature and I taught her to be street smart.  Tippy used to follow me everywhere.  She learned to wait patiently for me outside the local 7-11, where I would get a candy bar and a Slurpee, and always reward her with a chewy, chocolaty Tootsie Roll.  There were no leash laws back then, so my best friend accompanied me on all my travels.  She patiently listened to all my teenage angst with knowing, soulful eyes.  She was always there for me. We picked right up where we left off when I came home from college. She knew me better than anyone.  After her death, I thought I could never replace her.  I was right.  Her unique "pupness" could not be duplicated.  Eventually new paws would scratch at my heart though, and I would invite another dog into my life.

I think my dog Trudy sent this little pup to visit me today.  She knows I need a fur fix.  The therapy dog jumped up on my bed and John helped guide my arm to him.  My fingers tangled in his curls and when he looked at me with his brown eyes, a genuine smile softened my face.  This is so much better than any medication.  Our visit was short, but I won't forget the pressure of the dog on the bed, his healing eyes. Therapy dogs.  Their restorative powers are magical.  I am not sure man will ever understand the width and depth of a dog's healing potential.  I am grateful for all the dogs who have graced my life.  I am thankful for the nurturing visit today providing hope and solace for this ravaged body, frustrated soul.  Now...for just a little while.

Written September 11, 2010 7:35 pm

Anita had a good night's sleep which continued through the early morning. She was quite alert and in good spirits for the rest of the day.  Her vital signs (i.e. temperature, pulse, blood pressure, etc.) were stable. She visited with various family members and a number of friends for short periods of time throughout the day and was engaged with her visitors.

John tells me it's time.  There are many friends who want to visit and he feels I am up for it.  I want to see them, but I don't want them to see me.  I know I must look horrible.  I can't talk.  I can't even wave.  But somehow, that doesn't matter.  All these folks are praying for me, leaving me messages on Caring bridge, caring for my family.  I need to let them in.  I need to see their smiles, feel their comfort.

John funnels folks in just one to two at a time.  It's really awkward in the beginning.  Worse than a first date.  A lot of silences, but the ventilator fills the void, making sure no one forgets it is there.  John does a great job of keeping the one-sided conversation flowing. The sentiments are kind and helpful.  I like hearing about the kids and my dog. The anecdotes about them give me hope that there is some normalcy in their lives.  I love seeing John get a much needed hug.

We are so blessed.  The love from friends and family that surrounds us is holding us up.  I learn there is even a sign-up sheet to walk Miss Trudy everyday.  My mom tells me that she's quickly running out of room for storing all the food that is coming in. The comfort this provides is incredible.  I will never, ever forget these kindnesses and I hope someday to pay it back, forward, sideways, and upside down.

Thanks to all of you for keeping us going.  Thank God for friends and family.  You guys are the greatest! You help keep me going.

Now...for just a little while

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.

Written September 9, 2010  9:26 pm

Anita had a good night's sleep last night.  She was alert this morning.  The latest spinal tap procedure was performed this afternoon.  Results of these tests will be forthcoming in the next few days, whereupon the next treatment steps will then be determined.  Anita was quite tired after the spinal tap procedure, and rested for the remainder of the day.

The clock is melting.  Elongated, with the numbers one through six pooling at the bottom and seven through eleven climbing up to meet twelve.  Time moves slowly here, but the numbers appear to have given up.  My timepiece of reality is draped against the wall like a clock in a Salvador Dali painting.  I am aware I am hallucinating, but acknowledging this delusion doesn't make it go away.

I know that it's night because it is dark and I am alone.  I can't tell what time it is because the numbers on the clock keep moving.  I'm frightened.  I wiggle my fingers to find my pancake call bell.  Just feeling the flat disc under my fingers provides a measure of relief.  I want to press it and call for help. But I don't.  No one can fix this.  No one can help me.  I can't tell them I am seeing dripping clocks.  I can't tell them how horrible it is to lie here without sensation, wanting desperately to turn over and lie on my stomach, breathe on my own.   I don't want to be left alone with crazy clocks and disturbing thoughts. Maybe it's best that I can't talk right now.  I don't seem to have anything good to say.

So I close my eyes and make  my own reality.  I am asleep at home feeling the crisp coolness of the new part of the pillow I have just bunched up under my face.  I stretch my leg to find John on the other side of the bed. His breathing is rhythmic and soothing.  I roll over and pull my knees to my chest, glancing at the digital clock on the nightstand.  It's 2:00 am.  I feel that marvelous," I can sleep a few more hours" before the alarm goes off.  sensation.  In this reality, I turn again to spoon with my husband.  If only this were real.  I swear I will never take tossing and turning in bed for granted.  Ever.

Thoughts of sleeping in my own bed eventually chase away the sagging clock.  The minutes meld into hours until the sun peeks through my window.  I watch the dust motes dance in the light giving me hope and promise.  Another night survived.  The light has arrived again.  A new day awaits.  I pray for courage. For more time.  Now...for just a little while.

Written September 8, 2010 9:26 pm

Anita had a fitful night in her new surroundings.  Accordingly, she slept for the greater part of today.  A further spinal tap will be performed tomorrow to check again White Blood Cell, Protein and Myelin Basic Protein (MBP) levels.  Review of the results from this spinal fluid test, together with the results of the previous spinal fluid test and recent MRI test results will confirm if the steroid/plasmapheresis treatment program has had/is having the desired effect.  Next treatment steps will then be determined as previously noted.

I'm in a new room.  The Step Down unit.  I am told this is is forward movement, but I can't help but notice the smaller room with just a tiny window overlooking the roof. It feels like a step back, not down.   This is a step closer to discharge but I can't see the positives.  I'm still on a vent.  I still can't move.  Transferring out of the ICU indicates that I'm stable. Is this my new norm?  If so, how do I accept it?  How can I do this to my friends and family?

I have a new nurse here.  He looks like Arlo Guthrie with his wiry grey pony tail.  He is so kind. He always makes sure that I can press my pancake call bell, not just once, but three times, before he exits the room. He talks to me.  Not only about how I am doing, but about his day, his family. His kindness and this distraction are much appreciated. I need to get out of my head and into someone else's, where MRIs and spinal taps are just words in a chart, not arduous tests that must be passed to take another step down the ladder of the healthcare continuum.

Time moves slowly here and changing rooms is unsettling.  I knew the sights, sounds and routines of the ICU.  I should be encouraged to step down but I'm not. I'm scared.  Fear and loneliness are hiding in this room trying to get their hooks in me. I don't like my new surroundings.  It doesn't feel right.  But I can't tell anyone.  I'm not sure I would even if I could talk.  I need to be strong.  Don't give the fear any credence.  I would run from it if I could.  Instead I go to my mindful place, close my eyes and cocoon myself in large white wings. I pray for courage.  Peace.  I visualize myself walking with my dog.  One step at a time.  Now...for just a little while.