17 Aug

The medicine arrived yesterday. He is not sure how it will help, how it will make him feel.  He will take it anyway.  For a while.   Just to see.


For Me

7 Jul

People have asked, in all the busy of this past month, how I am doing, what I am doing for myself.  Rule number one – don’t become a casualty whilst trying to help.  Work is such that there is little time for a break right now, but I did manage to sneak a four-day weekend during which I have not checked my work email or voice mail even once.  They have my phone number, I keep telling myself.  They can find me if they need me.

I wasn’t sure exactly what I needed to do.  There was sleeping.  That was good.  And a friend from out of town came to visit for her birthday.  That was good.  And then on Saturday we took a spontaneous trip to the city and walked and looked at beautiful things all day.

We planned to be quiet and at home on Sunday to rest our tired feet, but a chance glimpse at this flier on my dresser led us to a most wonderful place filled with most wonderful things.

2013-06-27 08.04.27


It was a lovely weekend.  And I will bring up the new lab site tomorrow, exhausted and refreshed all at once.

Looking for Landmarks

3 Jul

And now we enter the season of – is this important enough to call the doctor?  Lingering headache, blurred vision.  (Did he say double vision?)  Still dizzy.  Still nauseated from the spinning sensations.  Of course, he says it is not.  Of course, I say he should.

A four hour shift today went well enough.  He came home and slept.  He still looks tired now.

Still no medicine.  Now the (new) pharmacy has the prescription, but no insurance information.  More phone calls.  More waiting.

All of this is still so very new.  Every day we read more, learn more, live more.  We know where we want to be.  We have directions for how to get there.  We’re just a little off course and looking for landmarks to lead us home.



General Rules

1 Jul
general rules

general rules

Food has been an area requiring navigation these days.  It makes me smile a little because it reminds me of being pregnant.  Some moments he wants something so very badly only to get it within two inches of his mouth and find out that it is not what he wants at all.  He wants colors, not flavors.  Red fruit.  Yellow and red vegetables.  Just green things.  He is used to loving food.  Loving all the foods.  He is frustrated.  I tell him, eat what you want.  Your body knows what it needs.  I will know if you are not eating enough.  Trust yourself.  Through all of this, that has become a mantra.  Trust that you know when you’re tired – and rest.  Trust that you know what you can do – and do it.  As with so many important pieces of life, there is no guidebook for this.  Still, we are managing.  Managing well even.  And that is something to celebrate.

Sleep Studies

30 Jun

When there is little sleeping, there is little writing.  It used to be different.  Inversely proportional.  Not now.  Now interrupted sleep night after night combined with extra stresses at work have kept me away from the home computer.  I can only stare at screens for so many hours a day.

Physical and Occupational Therapy are going well.  He is tired.  So very tired.  And not sleeping.  Not enough anyhow.

He wants to go back to work on Wednesday.  I watch him walk and try so very hard to not look discouraged.  He needs to be out of this house.  To not feel so very trapped.  He needs, we need, to sleep.


More to Digest

16 Jun

2013-06-15 13.29.53

Sticker Shock

15 Jun

The medicine is $10,000.00 a month.

The pharmacy kindly pointed out we could pay it up front and wait for the insurance to back-date coverage. Then we could be reimbursed.

Funny, there isn’t an extra $10K just hanging around.  I still don’t understand why our “advanced” nation insists on a for-profit, archaic system of healthcare delivery.  More on this later, I’m sure.

The neurology team thinks they have a solution. We’ll know more on Monday.