It’s not you, its me…seriously

5 Oct

Today I break up with my neurologist, that lackluster stick-in-the-mud.  It has been just over two weeks on the Prednisone and I am cautiously optimistic about a return to ActualLife™.  I have secured an appointment at an MS clinic thank you very much and will be taking my uninsured business elsewhere.

Dr. R, it has nothing to do with your strange OCD:  touch chair before sitting.  Knock thrice, clear throat, enter room as I am laying there freezing, populate whole of the office with signage:  No Drinks!  No Food! Don’t Put Bags On Chair! Flush Twice! Quiet! Please Replace Magazines! Put shoes here!

It does, however have to do with two things:

  • You have no sense of humor
  • You snickered at me when I wasn’t being funny – and I know funny.

The first point could be forgiven if you weren’t such a weirdo.  A lot of people have broken humor sensors. Not their fault. But it seems to be something you have honed over the years, crafted even.  It is strange and frankly, unsettling.

And then there was the couple times you snickered at me for asking questions, repeatedly about side affects of Prednisone, Tysabri treatment and the fact that I couldn’t breathe without straining like a muthafucka.

Note:  Those things weren’t funny.  Not even close.

And, a special thanks to you Dr. R, for being no help whatsoever in securing past medical records.  It would have been awesome if you could have had your assistant call all those doctors and MRI clinics in Chicago and NYU instead of just commenting on how much work I had to do to collect all the information for you.  You could have gotten off your dead ass and called in the prescriptions for me instead of making me and Tim go get them.

If I am being completely honest (and frankly, incredibly generous) I may be holding you Dr. R to an impossible standard:

I miss you

Dr. Alan Shepherd.  Neurologist, Moon Lander, Diagnosis Crush.

When I was going through my initial diagnosis in 2006, I came to know Dr. Shepherd through Northwestern University Hospital.  First off, Northwestern can’t be beat.  Secondly, Dr. Sheperd was a lambykins.

He poked my spinal cord and gently drained the diseased fluid with care, he tolerated my swearing, both in the office and over the phone (my CSF fluid white count is what!? Shit!), you returned phone calls promptly.  You gave me a yellow Rebif book bag with informational CD (Staring Terri:  Our Lady of the Multiple Sclerosi) upon diagnosis.  Your chicken scratch? glorious:

(I know at least one other person who visited Dr. Shepherd (Sarah G – you know who you are you vixen) for migraines and felt a similar stirring over Dr. S).

Maybe it was because I was fully insured back in those days that I got such attention from Dr. Shepherd and his staff. Perhaps it was because they could run test after test after test without me ringing it up on my mental calculator (I can have that blood test if I decide to not eat this week).

I don’t think so though.  Nope.  I like to think that some people – even brain doctors – are kind.  That something like a bedside manner exists even in a high rise hospital off Lake Shore Drive, regardless of insured status.  That when a person – like me – is going through some of the most confusing shit of their lives, there is a group of people that want to help and do.

The Power of the Care Package

4 Oct

Behold!

Yesterday the above arrived.  It came care of my 2 year-old niece Abigail and her big sister Bianca.  There may have been some guidance provided by Mom Jamie.  I can’t confirm or deny this as Jamie claims this is how the crafting of the care package went down:

I actually can’t take credit….Abby said “Aunt Andy, boo boo, sweet treat.” So off we went shopping! Glad you liked it! We were thinking of you and still are! 🙂

First of all, this is the story I choose to believe.  That Abby actually was the prime mover behind this.

Secondly, that child is being raised right:  Illness entitles you to candy

The care package is so awesome.  I have received a couple this go round and each arrived just as I had pinned a note to my chest and was fixing to step in front of a city bus.

Another one came from my pal Mookie (of the world dominating Mookie Jam Foundation benefiting artists living with MS if you haven’t donated yet get on the stick).  There were many things in this care package: Big Pharma, an intoxicatingly aromatic lotion for my feeble numb bod, digestive remedies, and this:

The power of the Care Package cannot be overstated.  You don’t need to run out and get something fancy.  Scrape off a back shelf, clear off the lazy Susan, get rid of last year’s Christmas candy.  Doesn’t matter – because it really, really is the thought that counts.

I’m queen of the world!

3 Oct

Took a long walk yesterday (down to Occupy Wall Street – of all places) maybe a bit to long as is my MO.  Feel a bit better, push it, feel like crap, swear to take it easier the next day.  But, with a disease that is this unpredictable, one has to seize the good days by the you-know-what and soldier on.

It was glorious outside – perfect fall day – wispy clouds, blue sky, intermittent sunshine and a cool breeze that got cooler closer to the Hudson.  I had a plate of pancakes (butter! syrup!).  They were delicious. My feet felt good – not like walking on broken glass.  My brain wasn’t racing via PredniMania™.  

I was killing it.

We came home just in time to collapse on the couch to watch the Yankees collapse in game two against the Detroit Tigers.  I slept a little, Tim slept a little, we snacked on corn nuts, watched Strangers on a Train (always awesome), I gobbled down my remaining steroids for the day, making sure to take ye’ olde Zantac so my stomach doesn’t explode into a ball flames from the Prednisone.

So back to my propensity to push myself:  I can’t do it.  I. Must. Resist!

It felt so good to actually eat and enjoy a meal at a restaurant!  And pancakes!  What, the last time I had pancakes was like, the 90s.  And to walk that far without having to take a breaky-poo.  Man oh man!  This (semi)wellness shit is addictive!

Today I woke up with that feeling: ATTACK IT!  Start back into that article that requires 110% of your brain to research and write, call all those people you have been meaning to call back for the last month of your decrepitude, clean for God’s sake woman!  Hula hoop.  Go for a run.

Seriously, this is where my mind takes me when I get in a good walk, talk to some protesters and inhale a stack of Bubby’s sour cream pancakes.

But, I will resist.  Sick of the two steps forward and self-induced one – three steps back.

Wish me luck homies.

Peter Dinklage: MS Fantasy

1 Oct

It’s not what you think

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Yesterday I was laying on the couch prepping for an early afternoon PredniComa™** wondering what I would do for the next couple of hours if my brain couldn’t shut it’s pie hole long enough to let me sleep.

These are the options I considered:

  • Watch Television – this seems reasonable, but for whatever reason I hate having the TV on before say 6 pm on a weekday (barring daytime Yankee games).
  • Read – the obvious choice right?  But, keep in mind the physical exhaustion that comes with the PredniComa™ limiting the ability and desire to hold a book for an extended period of time.  Not kidding.  I have a Nook – which kicks significant ass – but that too has it’s limitations for the kind of long term reading I would require.
  • Surf the Interwebs – seriously, this is all I do when I am researching and writing.  Its not a solution.  And, it would mean I have to have the computer laying on me.  God forbid my numb thorax be put through it.
  • Stare

As quickly as I could, I began staring.

Laying on my right side facing the coffee table and the boob I started wondering if anyone anywhere made a contraption that allows sideways reading? You know, like those weird little book tables you take to bed when you hit 40?  If there were such things I would prop it up in front of my couch-laying face and proceed to read, flipping pages with one of my (long) knitting needles so as not to have to move too much.  But that just seemed too out there – too much to hope for.

Then it hit me:  Peter Dinklage

At about 4.5 ft. tall, Peter Dinklage could stand (or perch on the side of the coffee table – his choice) and hold a book of my choosing sideways while I read.

I massaged this fantasy, stroked it like a newborn cub.

What would I offer Mr. Dinklage to eat? Does he have any dietary restrictions?  We have a new, single serve coffee maker, I could brew him some Donut Shoppe or Cafe Mocha.  Maybe he’s a tea drinker?  What would he be wearing?  Sweats?  Moccasins? Would he do me a solid and show up in his Game of Thrones wear?

Oh Please, God Yes!

Peter and I would agree on terms – maybe 5 minutes here or there to go smoke on the stoop or for potty breaks.  He would have to secure a 1990’s beeper (to be worn at all times like the lead cardiac surgeon at NYU) so he could be at my home within 5 – 10 minutes of PredniComa™ onset.  There would be negotiations for extra time to just sit and chat.

I think PD is the bees knees.  I know he would feel the same about me and this unique opportunity.  We would retain co-rights to any sitcom that gets picked up by Comedy Central as a result of our partnership.  Peter could be played by Michael J. Anderson of Twin Peaks and I could be played by a young Cloris Leachman:

                    

      Peter                                                        Me

** PredniComa™:   The state of being completely, physically exhausted on the couch (or bed) but mentally wide-goddamnned-awake

Was I happy yesterday? Scratch that.

1 Oct

A portrait of me*

Last night blew.

I think I may have gotten about 4 – 5 hours of fitful sleep.  Remember that laryngospasm I was waxing semi-nostalgic about (one source of my nighttime super-rude awakenings) like it may have been going the way of the buffalo?

Nope.

There was the 4:35 am Hackfest 2011™  and then the  6:50 am Hackfest 2011™.  That was after hitting the hay at midnight fulling intending to give in to the overwhelming physical exhaustion only to be kept awake by my steroid addled brain singing “Wake Me Up Before You Go-Go” over and over and over again.

Now I sit fitfully awake and pissed and waiting for the other shoe to drop.  The tired shoe, the pissed off one – because I can’t predict the arc of my sleep life let alone my recovery.  Come to think of it – that platform clog dropped a while ago.

They (and in certain circles, I) say one day at a time.  But you know what, sometimes that just isn’t enough.

The prednisone is starting to keep me up – my brain anyway.  My body is another story.  My body is exhausted.  My brain is up and ready to play.  (Maybe I should harness this?) I have never been an insomniac.  I have always laid my head on my pillow, inserted earplugs (I have a resident snorer) and no sooner donned my eye mask (don’t hate) and I am off to sleep.

Maybe I should just drag myself out of bed and go on an all night prednisone induced write-a-thon.  If only I weren’t so tired, I could use the Power of the Predni™ to clean the ever-loving so-and-so out of the apartment, paint the entire building, run a marathon twice a day and hula hoop through the whole of the Dexter DVD collection.

* Photo courtesy of the Ingrid Walker archives © in perpetuity.

And then there is this

1 Oct

Le Hermit

A definition:

L’Hermittes sign is the name given to an electric shock-like sensation which often presents itself with multiple sclerosis; although Lhermitte’s sign is not exclusive to ms and may be the result of some other conditions such as electrolyte imbalance, cervical cord tumour, cervical spondylosis, or even vitamin B12 deficiency.

Typically, the electric shock-like sensation radiates from the neck downwards and lasts for a very short duration; usually less than a second. The sensations can repeat indefinitely so that it might feel almost continuous.

The areas affected by Lhermitte’s sign are usually the arms and / or the legs, although the sensations can radiate to the trunk.

Lhermitte’s sign gets its name from the person who first characterized it, Jacques Jean Lhermitte, and is sometimes (rarely) known as ‘barbers chair phenomenon’.

This is because of the way that Lhermitte’s response is triggered; by flexing the neck forwards. When the head moves in this way, the electric shock like sensations are triggered.

In practice:

You have got to be kidding me.

This is electric shock.  Anyone else get this bit of magic?  I will be walking down the street (slowly) and look down (make sure no trip) and am literally shocked back upright.  I think the above definition is pretty accurate but the experience is bananas.  B A N A N A S.

Why can’t my bod harness this unbridled neck tipping energy into say meaningful thought processing, ability to not reread the exact sentence over and over again in this month’s Harper’s or minor energy depleting things like sitting upright for extended periods of time?

Or at the very least there could be a visual that goes with this.  Like a 1980’s Foghat laser light show at the Des Moines Science Center or like standing next to one of those static electricity globes that makes your hair stand on end?

Thanks Jacques.  You can suck it.

PS – I have fantastically low B12 as well.  Long live the B12 shot!

Okay seriously

30 Sep

Showoff

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