Archive for January, 2011

Several Unexpected Somethings

Usually my three-month visit to the ALS Clinic up at UCSF is the prototypical model of predictability.  Lotsa attaboys for stuff we Fehmeen excels in — like organization and scheduling — and a couple of we’ll I’ll do betters — like trying new things and following through on past commitments I said I would try the last time.

While our visit this past Friday had its share of both praise and constructive criticism, there were several interactions, pronouncements, and earth-shaking events that could only be classified as out of the ordinary.

In order of occurrence they were:

1.  Someway, somehow, over the course of the three months since I was last in clinic, I managed to gain 17 pounds.  Are you kidding me?!?  Seventeen pounds!?!  Knowing that this was physically an impossibility based upon my diet of six Boosts down the tube daily as well as an aggregate total of fifteen quarter spoonfuls of cream of wheat and mashed potatoes, we deduced that an error was made well over a year ago when they weighed my old power chair — without me in it — and therefore every calculation of my weight made since that time was wrong.  Being at 164 almost three years into my diagnosis is a whole lot better than 147, that’s for sure.

2.  I actually agreed to have breathing numbers tested in house instead of at Kaiser as per usual.  Unfortunately, I immediately regretted my decision the moment we got started.  It wasn’t for a lack of not trying, I can assure you.  We are booking a visit with my respiratory therapist Cyndi in Santa Clara as I blink/type and you read.

3.  My neurologist informed us that starting February 1 the laughing and crying drug I took during their clinical trial two years ago officially becomes FDA approved.  Yeah!!!  That means no more out of pocket expense for us in the procurement of these little white capsules.  Open up my tab, Mr Permanente.  Make mine a double!

4.  Five minutes into our visit with Dr Lomen-Hoerth, we all noticed that the room we were in was moving.  She casually informed us that hospitals are the safest buildings to be in during an earthquake because they are designed to a higher standard than other structures.  Her words were assuring especially as the room began to move again.

5.  Finally, we heard on KNBR as we were heading home that the 49ers had just hired Jim Harbaugh as head coach.  Nobody in the van was more excited about this news than Fehmeen who could not stop talking about how explosive their offense is going to be next year.  In fact, she was so jazzed by this development that she even greenlighted my fantasy football fees for the Fall.  Thanks babe!?!?


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This poll was supposed to accompany my post from earlier today but when I published it, I noticed that option two in the answer section was no longer there where I had placed it not five minutes prior.  Rather than waste time with silly tasks like proofreading and double checking, I prefer to live like I’m dying and dive blindly into potentially piranha infested waters.  Since we were running late for an appointment at UCSF, instead of fixing it right then and there, my only feasible option given our tight time constraints was to delete the thing.

Now that we’re home from the City and I have a little more time at my disposal, I can recreate the missing poll in this entry.  Once you see the three possible choices you will understand why I had to pull the plug earlier this morning.

Oh yeah, please vote.

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Hangin’ with the Fam

It was quite a scene in our living room last night.

Imagine me fully reclined in my Corinthian leather comfy chair, covered from neck to sandals with an exquisite orange Giants snuggie, Bi-PAP strapped to my head, pumping life-extending air into my mouth and nose.  To top it off, I am also listening to Steve Earle’s cd Washington Square Serenade rather loudly on my Bose headphones.  Is there anybody out there one two three on the satellite radio?

Now picture Emma standing quietly in front of our coffee table, just a few feet away from me, completely engaged in an activity that has engrossed her for the past twenty minutes.  She is methodically tearing pages out of her Curious George coloring book and carefully using her scissors to cut those same pages into long thin strips of various widths and lengths.  It is fascinating to observe the way she picks up the scissors before making the decision as to where she will begin her bottom to top ascent up the sheet of paper.

Emerging from the office comes Fehmeen who immediately begins to interact with Emma.  Five minutes into it, Fehmeen stands up and removes the headphones from my ears, telling me to watch and listen the two of them.  Emma has morphed into teacher mode and is showing her mother how to cut and color.  The pair of them play for a while with Fehmeen asking a lot of questions and Emma doing her best impressions of all the teachers in her life.

Even at this young age, you can definitely see the educator inside her itching to come out.

A young Jason chillin’ with the ‘rents.

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On Air: Hello there all of you commuting teachers and napping babies, welcome home, and it’s sure good to have you here with us today on the 50,000 watt flamethrower KJJP 109.9 FM.  For your listening pleasure this evening, DJ iGaze is going to play back to back to back to back to back hits that you want to hear — as well as a few that I think you should hear — for at least the next ten to twelve minutes without commercial interruption or annoying emergency broadcast system testing sounders.  So kick back and relax or get up and dance to the music that moves you, right here and now on the DJ iGaze show, only on KJJP.  Up next is the one and only Bwuno Mahhs with Just the Way You Are.

Cue Music

Off Air: Once or twice a week I like to play music on my Dynavox for my two little ladies.  Because the speaking software sucks up so much of the available memory, I am unable to run iTunes (without slowing the whole system down) or Youtube (choppy video and audio quality).  I have had to resort to typing in an artist’s or band’s name into Google and playing any number of the four songs that pop up as a result of that action.  The biggest issue my only two listeners have with this particular method of tune-gathering is that most of the songs are only a minute and a half sampler of the actual tune. Just about the time the party gets started on the dance floor, the music stops and DJ iGaze has to go searching for the next ninety second cut.

My question to you is this:  Is there anywhere I can go online to find pop music from today that is available for me to stream and play on demand?  Any suggestions would be helpful.  Gracias.

** Poll deleted due to it being a lame question and for its general lack of interest as evidenced by only getting three votes.  I didn’t intend for it to come off as weird and creepy.  I just thought it would be funny.  Future polls will be better, I promise.  Sorry.  JP **

Cousin Nicole and me during a family gathering during the 70s

The two cousins cutting the rug at Uncle Mike and Aunt Nancy's wedding. Our Grandma Marie is wearing the floral design and Aunt Nellie (Nicole's mom) is in pink.

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Thank you for your kind words of support in the comments section of my latest blog entry.  I appreciate the fact that people even come by here at all, much less take the time and effort to write such thoughtful sentiments, I can only express my gratitude by saying thanks.  So thanks.

In terms of the coughing, it is still annoying and fairly persistent but this morning I had the daughter of the mother of all sneezing episodes and once it passed, I had Lhito jam the suction machine down my throat and hoover up the excess phlegm that risen to the surface following the fast and furious flurry of sneezes.   The end result:  I am feeling a little bit better.

Quick announcement:  Due to unforeseen scheduling conflicts, this week’s Thursday Afternoon Movie Club meeting is cancelled.  We will return to the theater on Thursday, January 13, 2011.

Poll Question of the Day:  Which kind of person are you?

Scans of the Day:  Here are a couple of photos from my very own toddlerhood back in 1969.

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All I Need

Persistent lingering HACK.  Interrupting normal flow of life HACK.  No comfortable way to expel HACK HACK super-sized ball of phlegm from the back of my throoooooo.  HACK HACK HACK.  Pause to catch breath.  Fire up the DeVilbiss suction machine.  Insert into mouth.  Bzzzzzz bzzzzzz bzzzzzz.  Remove the wand.  Reinsert into other side of mouth.  Bzzzzzz.  Several minutes of relative peace and quiet.  hack hack.  Coughing since Christmas hack.  Wake up tired hack HACK head full of Nyquil.  How much more hack HACK HACK of this hack HACK ’til it breaks HACK my hack hack spi…

It’s been nearly three years since my D (for Diagnosis) Day and I have always considered myself to be a person living with a terminal disease as opposed to dying of a terminal disease.  As of late, however, a small but nagging and relatively persistent train of thought has derailed my locomotive of positivity.  For the first time in all my forty-one plus years of life have I ever contemplated the concept of my endgame.  I assure myself that these thoughts are directly correlated to my being sick with this cold but they still make me feel sad and alone.

Without prompting she walks across the room to my recliner and asks me if I would like to have my hair brushed.  I nod my ascent vigorously and without hesitation.  She climbs up the armrest and seats herself on my left hand side.  She begins running the red comb through my hair as she tells me how beautiful it’s going to look when she’s done.  Then she hops off my lap in order to retrieve the small plastic hair dryer she needs to use of my head of lettuce.  For the next few minutes, my daughter sits with me combing and drying my hair and talking to me about nice it looks now.  You couldn’t have combed the smile off my face with all the combs and brushes in the world.

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