Blog Posts & Chapter Excerpts

No One Thing

It struck me, just now, although I’ve been working my way here all along. There is no ONE thing to cure us. No pill, no diet, no workout alone can actually heal. I’ve known it intellectually, but not intrinsically. I didn’t trust myself. But with each improvement comes new evidence. Yes, I am the spiritual type, but only after the rational side has been quieted down. Dr. Rogers of Mile High Church gave his sermon this week on “Putting Your Mask on First”. You know, the oxygen masks that drops from above your head in a crashing airplane? If you don’t save yourself first, you’re useless. It’s been a long road, and it’s not one that I will pretend to be at the end of. I’m wiser, stronger, older, and more set in my ways, but I’m not done yet. I am generous beyond repair, but give me that damn mask. And if you get in my way? Well, you only cross a livid Italian princess once :)

9/11 A Tribute to the Fallen

Yesterday began as I expected. We watched the memorial ceremony for the ten year anniversary of 9/11. I remembered images of bodies falling from towers, images that have haunted me over the years. Every time that I’ve seen the burning towers since that morning, my mind has flashed back to the bodies, falling.

After the ceremony I took at trip with my husband to walk at the wildlife refuge in town, and I spotted two hitchhikers. We’ve been watching a TV show called The Buried Life, which encourages acts of kindness each day. So I pulled a U-Turn so that I could cross, “Pick Up Hitchhikers” off of my bucket list. They were the least intimidating hitchhikers I ever have and probably ever will see. Wearing yachting clothes, white polos and khakis, they carried shopping bags in their 60-something year old hands. They graciously thanked us and told us about their plans to have lunch with their son. They’d come to Newport on a cruise ship, and they were impressed that it was our “permanent paradise”.

My husband and I walked together, reflecting on the day. I was slow walking, but the day was clear, free of clouds, crisp, just like the original 9/11. I took note of the airplanes flying above. I remembered the eerie silence of the days that followed 9/11 when all planes had been grounded. I remember being relieved when the sound of planes above finally had returned.

In the spirit of giving back, I decided to start a new charity called Cleanse, Comfort, Nourish the Soul to Heal. I wanted to help people with MS and other chronic illness free up energy to focus on healing. I am still working to get sponsorship and volunteers to help with the tasks that I personally find most difficult: cleaning, laundry, cooking, grocery shopping.

And then, on my way out of work, I fell.

It wasn’t a simple stumble, it was an all out hard fall, onto pavement. I had tried to catch myself, but this time I failed. My coffee cup when flying, my ankle hit, then my hand. I somersaulted, landing on my back in the middle of the road. My Coach bag lay wounded, my items scattered, legs in the air.

I had fallen.

I did what anyone would do. I quickly looked to see who had witnessed my shameful fall. Now I wonder if those falling from the buildings did the same. But no one saw me. It was just me and the concrete. So I gathered my things, and I climbed into my car, shaken to the core. Once again my Beetle was my retreat. I felt safe, protected. It was 9/11, and I had fallen. I hadn’t deserved it, certainly not that day – but I had fallen none the less. And so had they: with plenty of time to wonder who was watching, to feel desperation, fear, sadness – to know that only concrete would break their fall.

And their getting up would be in the form of a spirit rising, a spirit that on that day never deserved to fall.

Excerpt, “You’re Turning Violet, Violet…”

But the Rebif caused other side effects that I couldn’t ignore. I wasn’t sure if my heart palpitations were real or my hypochondria acting up, but then my hands and toes started turning unsettling shades white, purple, and blue.

I called my family doctor back in Connecticut because there was no one in Rhode Island who I trusted enough to tell me why I was purple. He’d been there for the MS, and I wanted him there for this too. I knew it wouldn’t change the news, but I knew his compassionate nature might cushion the blow.

I drove back to Connecticut for Father’s Day, and Dr. Novak diagnosed me with Reynard’s Phenomenon. The name alone cracked me up. But the symptoms aren’t so funny: blue fingers, swollen, purple toes, patches of raw skin that get infected due to poor circulation. Lovely. I had to laugh when I told my family and friends; at least purple is my favorite color. When things were going badly I made jokes. I had to try and keep it light, or I knew I’d fall apart.

Acupuncture, Relishing in Round 2

I didn’t want to go to acupuncture. Not the first time – and not even the second. You see, the first time that I went was really out of desperation. Pure fear propelled me to take my in-laws up on their offer to see the Chinese Medicine Man.

I had sores in my mouth, and my anxiety prone mind kept replaying the part of the Gilenya study that read  ”two people died from herpes during the study”. Death by herpes? I can’t imagine anything worse. Death by chocolate? Yes, sign me up. Death by needles fell somewhere in between.

When I finally found the office of Acupuncturist #2, I was convinced it would be my last visit. My friend (and photographer) Nicole had pressured me into going to see this particular doctor of acupuncture. Nicole graduated from West Point; she served in Iraq for a year and a half. She has a soft side, but if she wants you to do something badly enough, she’s going to get her way. I planned to experience it, blog about it, and then put it into my box of “Tried That”s.

I had spent the better part of my morning filling out a ten page questionnaire about my health, past and present. I answered every last detail. It’s probably the most honest and thorough I’ve been. I thought it’d be a waste of time in the end, quickly leafed through and then permanently filed away, but I couldn’t have been more wrong.

We spent hours, literally, discussing what I’d written. The doctor made notes, left no stone unturned. I couldn’t believe it. She was redefining “doctor” as the minutes slowly passed.

When it was time for the acupuncture, I was actually ready. It wasn’t like the first time, when the doctor had shoved nearly 30 needles into me in a matter of minutes. This was more precise, clearly calculated.

With each needle, I felt something different. The one in my left foot triggered the nerves in my right arm. The one in my right ear triggered sensations in my left ear. The needle in my left leg shot energy through my right leg. My body worked to balance itself. And even the more subtle reactions were ones that I could feel in my head, like a rush when you suddenly get up from laying down for hours. I relished in each response.

The rest of my body followed suit; breaths became easier, then slower. With each needle in I deeply exhaled. It wasn’t painful, it was pleasurable. I’d missed my needles, the punishment of the disease. And here they were, but in a more gentle, coaxing form. It seemed that they always should have been this way, instead of being violently plunged into my body. They should have gone in with care, thought, planning. But the MS injections seem to mirror traditional medicine – haphazardly executed, carelessly selected, quickly administered.

This was a whole experience of Mind, Body, and Spirit. It wasn’t rushed; there were no promises made. And when I left, I knew I’d be returning. This was the way the body was supposed to be handled.

Excerpt: The Market-Place

I devoured the chocolate cake in front of me as if it were my last meal on death row. I hadn’t eaten chocolate or tasted a sip of alcohol in over four months. The martinis were starting to do the trick, and for the first time in months, I actually felt normal. I was smiling and laughing. I was eating cheese and ice cream. I wasn’t dying from it; I was alive from it.

We left the restaurant, and we followed the sound of loud music, getting blown through the torrential April rain. Our umbrella turned inside out, it got carried away into the streets, and we laughed so hard we almost peed.

When we found the music at a small Irish bar, I became entranced by the singer. I was so giddy that I had the bright idea to join him on stage. It was my own Coming Back to Life Party, orchestrated by none other than Kelly herself.

Prologue Excerpt, My Stalker

I felt it stalking me for years. It was there in the shadows, under the bed, hiding in the closet. I feared everything. I had flashes of violent car crashes and tidal waves. I slept with the hallway light on, taking laps around the house at all hours to triple check that the oven was off, that the candles had been blown out. I touched the light socket to convince myself that my hair straightener had been unplugged. I took a photo of the empty electrical socket. But I still managed to convince myself that it was plugged in. That the photo had been taken on a different day.

I had nightmares, night terrors, woke up drenched in sweat. I dreamt of dying in fires, of being trapped, of falling. I had panic attacks in bathrooms, on boats, in dorm rooms. I knew something ominous was lurking just around the corner, I just didn’t know what it was.

If I stood before you, you’d probably tell me how great I look. You might smirk at my complaints of being tired. You’d jokingly chastise me for yawning. You’d think I was lazy, or just up late, partying. You might eventually wonder why there were five or six pill bottles in my purse. You might notice a bruise here, a rash there. But you’d rationalize it away. I bet you’d never guess my secret.

Acupuncture, check.

First ever acupuncture appointment today. Ouch. But good pain? Fulfilled all my needle cravings. Doctor said, “You’re a mess.” Put me on a three week detox. This should be interesting. Starting Monday. Approved foods? Fish, chicken, brown rice, veggies, fruit, gluten-free stuff…that’s it. Plus I have to drink a special shake each day. I’ll keep you updated :)

The Vibe Machine

This is The Vibe Machine. My hubby and I just used it this morning, sitting side by side, holding tightly wound spiral copper wires in each hand, meditating to its whizzing and whirling.

I am blessed enough that my mother-in-law owns this machine. It sends frequencies through your body, balancing, and rebalancing you, sending signals to your organs, encouraging them to vibrate correctly.

I felt it electrifying me. Shooting through my bones, tingling my neck, sending pulses down my right arm, prickling the sores on my tongue. It could be terrifying; or it could be exhilarating. Take your pick.

When you have a serious disease you risk sounding crazy, looking crazy, being crazy, all for a chance at Normal. So I choose for it to be exhilarating.

I choose Crazy and I wish and I pray and I electrify – all for my shot at Normal :)

Chapter Excerpt The Director’s Hall

Excerpt:

“Another peculiar torture was felt in the gaze of a new eye. When strangers looked curiously … – and none ever failed to do so, – they branded it afresh into [her] soul … (Hawthorne 59).”

 When I arrived at the hotel, it looked deserted. The blue floral wallpaper was from the 70’s, it smelled of mildew, and the windows hadn’t been cleaned in ages. I couldn’t even see sunshine.

This can’t be it, I thought. But then I saw a small plastic table of older women wearing name tags around their necks. Oh no, this is a mistake.

“Hello,” I said hesitantly, “I’m a volunteer for the Filmfest.”

“Yes, this our table. Although we seem to have plenty of help,” said an older woman, looking me up and down in my sundress and glittery makeup. I could almost hear her thinking, hussy.

I was tempted to run. To hide back in my apartment bedroom and close the blinds. That’s it, it’s only my second weekend here, and already I’m a failure. But then I remembered; I couldn’t run. If I was lucky, I could walk.

“Oh,” was all I could manage.

I was ready to retreat, to surrender at once. But Fate wouldn’t have it.

“Well, I’ll just stay anyway,” I heard myself saying, as I looked around the musty room for a place to sit.

Chapter Excerpt! My Scarlet Letters

“She could no longer borrow from the future, to help her through the present grief. To-morrow would bring its own trial with it; so would the next day, and so would the next; each its own trial             (Hawthorne 54) … ”     

I get confused now between our goodbye on January 2, 2007 and the one before he left me for Tokyo the first time. I guess that’s because his leaving me is all that clearly remains.

By design, not coincidence, the day that he left was also the day I was scheduled to meet the first MS specialist. He must have felt guilty for the distance he’d stacked between us during his visit, because when he emerged from the gas station he carried a bouquet of red roses and wore a sheepish grin. I felt cared about again, connected, but in a fleeting, haphazard way. My thoughts returned to him injecting my thigh with my medication. It was the closest I had felt to him all week. I wanted this moment to replace that one, but something about this one felt contrived, while the other was so painful I knew it was real.

Watching him carry roses felt nothing like watching him handle my needle or prepare my ice pack. Although I’d always been one to size people up, I remember being suddenly struck by the desire to make a different kind of judgment call. Were these roses for me, his girlfriend? Or were they just an empty gesture, meant solely as a parting gift for the disease?  I had to learn to distinguish between pity and love.

Here he was, the person I had been searching for all week, and he was conveniently reappearing as I was driving him to the airport, to return him to his life in Tokyo. A simple life. Perhaps he had planned it that way, but I honestly believe it was more of a subconscious repentance. It was a temporary, half-hearted penance that would be forgotten long before the wheels touched down at Narita, without reciting a single Hail Mary.

Wedding Day

I popped a pill

to wake up

somewhere between my 20′s hair style

and shimmery make-up application

My bridesmaids

covered the bruises

on my arms

from my IV treatment

with MAC foundation

And when the make-up

artist asked why

I was bruised

I lied

And said I didn’t know

When in fact

The truth is

I just wanted to be

a Bride

without a disease

without bruises

without anything

to hide

on my Wedding Day

Imperfection Revisited

The trouble with optimism

is the disappointment

that seems to inevitably

follow

The problem with hopes

are them being crushed

severely and often

The fear of remission

is it not lasting long

enough

for me to pronounce

the word before

it slips away

And with each

relapse

my faith wavers

even more violently

The cause is

MS

the cause is

Unknown

The cure is

yet to be

perfected

And so

am I

The Gift of Words

She was born
In the eighth hour
On the fourth day
And the ninth month
Of an odd year

She came that day
Though they expected
A He

And so she was named
Hastily —- with just
Four Letters
Perhaps To match
The fourth day

She slept
And they slept
On it
Deciding at last
That her four letters
Were all wrong

That two of those four
Must be changed
To match her
Insides

So the T-E became
L-O and the R-I
Were demeeded
Acceptable
To stay put

And with their
(Ever so slight)
Shift
She was given
The Gift of Words
Wrapped in a pink
Blanket
And tied in a neat
Manuscript (MS)
Waiting to be
Unwrapped

Giving her life
And letters
They ingrained
In her
A Love of subtly
Selected syllables
That she would share
With the world
For years to come

Meet Montel

Meet Montel

26 May

When I woke up from my dream this morning in Nassau, I had to share it with you. It began simply; I was at home in Rhode Island. But then I heard fighting and animals whimpering. There’s nothing I hate more than animal abuse. I looked out of my door, and there were two groups of people in two cars fighting each other. I tried to remember the color of the cars so that I could identify them, and then my dad appeared with me. My protector.

“Dad,” I asked. “What should I do to stop them? Call 9-1-1?”

“Yes,” he nodded.

On the phone with the operator I tried with difficulty to explain my location. Outside of my house. But I gave the wrong address. Help, I thought. Please, help. I need someone to stop the violence.

Waiting for the police I saw one person hit another with a crow bar. How could it be possible? How could this violence continue and be outside of my door? I was scared, but I felt a desperate need to stop it. I needed to stop their pain.

The next part I remember is that the evil-doers had identified me as having identified them. They chased me. They chased my family and friends. We all were separated in a foreign place. I was alone in the streets, being chased. And then?

Montel Williams appeared. He was in a long dark black coat, like the Matrix I suppose. And he had a very long white stick that was ten times that of a blind man. Yet he had sunglasses on, and he appeared to be blind – disabled and harmless to my attacker.

I thought, this is Montel. My dream is to meet him, but I can’t meet him now. I have to save myself. Even if I want to meet him, even if I want to save the world, I have to come first.

But Montel blocked them, facing me with his black coat. He knew me. He knew my name; he seemed to know everything. And in his presence, I was safe.

He fought off my attacker with the long white stick that he used in a Ninja-like manner. He wasn’t blind; it had all been a ploy. The weapon swung, it looped – it won.

In a cafe nearby, I sat at a table with Montel. I was giddy. One of my heroes had literally just saved me. And I had the opportunity to speak to him.

I told him about my job, how my students had just graduated, how much I loved teaching. I how needed to feel well enough to teach. I teach at the same prep school that Montel attended in the 1970′s (this is real, not part of the dream). I love it.

He knew my name, but I wasn’t sure he knew that I had M.S. or about my blog. So I asked if he had tried Gilenya. He said he had; then he said he hadn’t. He looked at me, and he told me that I looked healthy. I told him I felt my best.

He told me to keep writing.

So I did.

Letter to Creator

Dear God,
There are some here
On Earth who
Fear the Rapture,
Who fear life itself
Despite its
(countless)
Blessings

Please, correct me
If I am wrong
But I believe in a
Loving creator
Who
Knows
We are perfect
That we will never earn
Eternal misery by
Simply Being
Who we are

I gave up the
Fire and Brimstone
When I met wonderful
People –
Homosexuals
Jewish
And Diseased –
With hearts
(And souls)
Of pure gold

(Please count me
as One of Them)

Sure, I wonder
Where I will be
When my World Ends
And I Pray
That I am not
Stripped of my
Time

But I am certain
I will have earned
A place of Peace

I am certain
If I were Jewish
or Homosexual
I would have
Earned it
Just as
I have earned it
Diseased

Amen.

No Stranger

I’m no stranger

to this phenomenon

of shedding

parts of me

for the benefit

of the disease

In fact

it all began here

with chunks

in the sink

Even before

the diagnosis

I knew

something was wrong

but I didn’t want

to be right

Then came the

first medication

and more loss

of locks

at age 27

I was losing

my hair

my vibrance

my strength

like Sampson

And now my

drain is again

draining me

littered

with strands

that refuse to

stay locked

in place

They want

out

and who can

blame them?

Lost Souls

In bars
Littered with prowlers
On the hunt

Crowds mingle
And drinks lubricate

Humidity tangles
Hair and later
Dampens
Bed sheets

Nights entice
And beverages
Flow

Souls float
In and out
Of tainted bodies
Unsure of where
To rest

They search
For us
As we search
For us

And they
Return
With the sunrise

Content
At last
To be home

 

Terrible Tuesday

 

When the raindrops
Fall they hit me
Even if I am dry
And indoors
They still soak into
My bones

When the puddles
Form
They reflect my
Discontent

Dampening my spirits
Drenching the ground
Quenching the dead folks
Paving the way for
Potholes I will run
Over
And generally
Soaking my senses
Until they drown

Leaving me
Water-logged
And sopping
Weeping
Wet

Silent Snowflakes

They float
Down
One by one
In crystalized perfection

You can’t hear them
Falling
As they blanket
The earth

But they do
Fall and
They do float

Their journeys are
Together
But alone

Each one changes
Along their unique path
Evolving
Against the elements

But still remaining
Perfect
From birth
Through
The bitter
End

Giving Tree of Mothers

They give us life
Moms do
Physically of course
But in more ways
Than I can count
My mom has Given
And given and given
Like The Giving Tree
And it isn’t until
We truly Need them
When no one else
Seems to give a crap
That we even begin
To appreciate all they
Have Given
And will Give
Even when only
Their roots
Remain

Past Life Revisited

A healer
In the form of a man
With a gift
Of telling stories
That would come true

I would entertain
Through words
That touched people
And gave them hope
Of a brighter future

So today I wish
To share a tale
Of healing:

There once was a
Disease that ate
Away our insides
And ravaged our
Sense of self

It used us
To feed on
To grow stronger
And we felt weak,
Depleted

…But we used it too

To learn how to fight
To gain insights
Into compassion
And friendship
To become a wiser
Version of our former selves

And as much as
It hurt us,
The best lessons
Are that way
Sometimes

And in truth,
We hurt it too…
With our cursing
And medicating
And trying our
Very best to
Kill it

Well, one spring day
We woke up
To birds chirping
And we heard them
Celebrating life

And then
It was time
To call a truce

To release it
To thank it
For its many lessons
To appreciate who
We had become
And to bid it a
Fond farewell
Like an old lover
Who always holds a
Special place in our hearts

Like a lover who we
Are no longer angry at
Who we don’t resent
For leaving us

Like a lover who we
Are at peace with
And all that we shared
All that they taught us
About life and love
And the world

Keeping our memories,
We can at last say goodbye
And part ways
Without anger
Without hate
Without fear

We can move forward
And look back now and
Again fondly
On how the time we
Spent together
Was meant to be
And meant to end
All along

Matching the Mirror

She looked…

Healthy
To me

With tan skin
And pink cheeks

To me
Her skin
Had a slight glow
To it

And it looked
Fresh and sun kissed

I examined her
Closely
Her eyes
Then
Their twinkle

To me
She finally
Looked beautiful

Because that’s how
She felt on the inside

At last
Her insides
And the mirror

They matched

The World Shrunk

The world was so big
When we were children
And everything seemed
So very far

But being sick
Is a lot like that
When the bathroom
Seems miles away
And the stairs
Feel like Everest

Today the world
Shrunk a little
When I chose to walk
The mile downhill
To the sparkling ocean
That patiently waited
To greet me with gentle
Sounds of encouragement
In the form of splashing waves
And seagulls squealing

near
Children tossing rocks

into
Green and white foam

The ocean didn’t mock me
For finally getting here
Four years later than I wished

But I guess nature is like that
Understanding the slow way
Of life

that we too often zoom
Past on our way to something
Much less epic

She waits patiently
Embracing each of us
When we finally make it
To the top of our

own
Everest

And today my backyard
Grew
And today the world
Shrunk

Awake

It’s foreign to me
Like another tongue
Or feet that you
Borrow for the afternoon

This feeling of sleeplessness
Has evaded me for years
Using its MS shield
To fend off long nights
And restless hours
Of tossing
Then turning
In twisted sheets

I forgot how still
The world becomes
How peaceful it can be
In the night
Before the expectations
And demands of tomorrow
Can really quite find you

But what starts as a
Calming silence is
Punctuated
By distant fog horns
And reckless night goers
Reminding you that tomorrow
And its tired troubles
Is never really distant
Or even at arm’s length

It’s lurking just in front
Of your sleepless eyes
And taunting your
Wound up brain
With to-do lists
And thoughts of lost
Dreams
That are just beyond
Your reach

Spin Cycle

it’s like the spin cycle

or tumble dry …

my brain

sometimes

it makes my office

feel like a merry-go-round

without

the merry

it’s that

oh shit

i drank too much

the floor is spinning

sensation

when you’re sober

on a Monday morning

and it’s the Gravitron

after you Exit

the ride

in time to see your fried dough

shower the muddy grass

and spray paint your shoes

it’s the stomach flu

on a hot July afternoon

your insides in

melting trash bags

when there is

nothing left in your gut

but your body wants

that

nothing gone

too

Bloggercise

Have you ever heard of Bloggercise? Me neither. But it’s what I’m doing right now and it feels a lot like trying to read in the car. My master plan to swim with my new Speedo Aquabeat has backfired. I am resorting to the ellipitcal in sweatpants and a work shirt…the pool has been invaded by families and small children. Shit. No socks, just sneakers. Gross, but that’s dedication. Afterall, I’m here already. On mile 0.39 and my feet are getting sweaty. But at least I can feel them moving : )

The World Shrunk

 

The world was so big
When we were children
And everything seemed
So very far

But being sick
Is a lot like that
When the bathroom
Seems miles away
And the stairs
Feel like Everest

Today the world
Shrunk a little
When I chose to walk
The mile downhill
To the sparkling ocean
That patiently waited
To greet me with gentle
Sounds of encouragement
In the form of splashing waves
And seagulls squealing

near
Children tossing rocks

into
Green and white foam

The ocean didn’t mock me
For finally getting here
Four years later than I wished

But I guess nature is like that
Understanding the slow way
Of life

that we too often zoom
Past on our way to something
Much less epic

She waits patiently
Embracing each of us
When we finally make it
To the top of our

own
Everest

And today my backyard
Grew
And today the world
Shrunk

Dickinson on M.S. ?

“Crumbling is not an instant’s Act

A fundamental pause

Dilapidation’s processes

Are organized Decays.

‘Tis first a Cobweb on the Soul

A Cuticle of Dust

A Borer in the Axis

An Elemental Rust –

Ruin is formal — Devil’s work

Consecutive and slow –

Fail in an instant, no man did

Slipping — is Crash’s law.”

– Emily Dickinson

Awake

It’s foreign to me
Like another tongue
Or feet that you
Borrow for the afternoon

This feeling of sleeplessness
Has evaded me for years
Using its MS shield
To fend off long nights
And restless hours
Of tossing
Then turning
In twisted sheets

I forgot how still
The world becomes
How peaceful it can be
In the night
Before the expectations
And demands of tomorrow
Can really quite find you

But what starts as a
Calming silence is
Punctuated
By distant fog horns
And reckless night goers
Reminding you that tomorrow
And its tired troubles
Is never really distant
Or even at arm’s length

It’s lurking just in front
Of your sleepless eyes
And taunting your
Wound up brain
With to-do lists
And thoughts of lost
Dreams
That are just beyond
Your reach

Sunshine Bear

 

Today the tables turned
when I opened the bill

But this time it read $137
instead of $2500

A voice
on the other line
said,
“We fixed that
for you…”
and I
was left speechless
for once

For some
it means nothing
its just the way
life goes
falling into place
effortlessly

But for me,
for many of you,
we’ve learned
to expect
the struggle
to be ready
at all times
for the fight

But today
or last month
or maybe last week
something shifted

I hope
I (maybe) felt it

It shifted beneath
me and beneath
many of you
ever so slightly
in a new direction

Where hope
doesn’t feel
quite so hopeless

And the resistance
we stand up against
lost a bit of its bite

Or maybe the spell
it has over us
began to falter
against our antidote

Standing together
like the Carebear Stare

Because maybe
this shift means
we can win
(some) afterall

Healing, the Next Generation

On Tuesday, May 3rd, 2011, I will embark on the next phase of my healing process…

This is where Fate has landed me, and who am I to question her?

You all know I am cynical when it comes to doctors, so it’s really no surprise that Fate has led me here for the next phase of my adventure.

I can’t wait to share my journey with you…

A Market for Snowflakes?

As it seems, some people believe there isn’t a “market” for writing about MS. To this I answer, is there a market for love? For loss? Is there a market to document struggle and pain? A market for small successes and large failures? A market for stories that overlap, but really are truly unique, like snowflakes?

Last night was the first time that I had to really convince myself to take my Gilenya pill. I carried it around with me through the house. Kitchen. Bathroom. Living Room. Bedroom. Kitchen. You see, there is a slight rash on my chest…it is barely visible, but I can feel it. It is annoying me. I have taken Claritin, Benadryl, and Sudafed (not all at the same time of course). But the rash is still there…

Let me guess…ask my doctor? Ha…right. First of all, which doctor? The one who never even called to see if I was alive after my Gilenya observation? Or the one who will say, “It may or may not be related…”?

It’s a risk I’m not willing to take. I need Gilenya.

I myself, a smart, educated woman, can tell you that it “may or may not” be related. I can save my time, my money, and my frustration. Because I believe they know nothing. I believe I know more than they do. And so do you, and you, and you. And the stakes aren’t high for them. So they won’t blink when they tell you to go off the medicine to see if the rash clears up.

They won’t think twice or even once about it. But I will think a thousand, million times about it, all before they’ve even finished their sentence.

And in my perfect world the only doctors who should be ”MS Specialists” are those with MS. And in my very unperfect world, WE are the specialists my friends. Except we don’t get the fringe benefits or the hefty paycheck. We are the market for snowflakes.

Invisible Bullets (featured on Montel Williams website 4/24/11)

when you finally
tell them
their first response
is almost always
silence
or else a sound
that is not quite
human
the silence is
followed by
an intense stare
as if they faced
a loaded pistol
but the bullets
are pointed
at me
you can see
a glimpse of pity
but it is so immediately
replaced by doubt
you wonder if it
was actually there
or just a reflection
and under their scrutiny
you shrink
from the silent questions
of whether you created
this lie
to gain some kind of
sick attention
since they can’t see it
it must not exist
since you don’t
continuously
whimper in pain
it must not hurt
or ruin you
and you feel angry
that you must defend
your death sentence
but the rule of faith
tells us
that just because it’s
invisible
doesn’t mean
it doesn’t exist
believe me
i am directly
in its crosshairs
and it couldn’t be
killing me
any more clearly

Schizophrenic Play-Doh

 

split
in two
our bodies
and
our minds
are disconnected
nerves falter
and misfire
as synapses
fire blanks
communication
break
d
o
w
n
and we are torn
into small fragments
of our former selves
like Alzheimer’s
we forget
we remember
we fear
losing
our memories
as they flicker
like an electrical short
we see images
like television dots
with no reception from
old rabbit ears
and in turn
we shape two
of us
the one
who accepts our fate
and the one
who refuses to
we invite
depression to
join us
when we realize
neither
can win
because eventually
the Play-Doh molds
of our
split personalities
must either
unite
or face
complete
extinction

Princess and the Pea

 

When I started Copaxone
it was just the same;
I needed a nap
to follow the needle

My body needed time
to digest and slowly
take it in
Making room for it
churning it around
like a heavy steak dinner

But eventually
my own meaty flesh
started absorbing it
started soaking it in
like a thirsty tomato plant
in July,
metabolizing
the juicy needle
like water

Gilenya, it seems,
has similar roots

What used to cause
me to sleep
for half a day
now keeps me awake
for half a night

And as I write at 4am
I am hesitantly blissful

For there is so much to do
that I haven’t yet done
and there is so much to say
that I haven’t yet said

Because MS has bound and
gagged me

But I need my beauty sleep
to be sure it’s done
at least medium well
and to be sure it’s said
deliciously

Junkie

How could I possibly miss the feel of a needle? Long for the intense pain? I guess it is abusive. Maybe I am that girl. I want the bruises. The drama. I’m a pain addict.

Or maybe I just want the punishment to fit the crime. It causes me pain; I want to return the favor.

Those shots are no joke. They are impossible to forget.

But a pill? It’s too painless. It doesn’t challenge me to prove my courage each day then sit in freezing cold ice to numb it. Gilenya, she erases the intensity; she disputes the sheer horror of It.

She’s a bit too silent for my taste. She doesn’t scream and shout or make a scene.

She’s the quiet girl, getting her homework done in study hall. She’s the one you admire but dream of tainting just the same.

Today I’m a 6.5

Today, Day 29, is the first day of my new Gilenya pack. Again, I labeled it Limitless, but this time I added the phrase, “better each day”. Then I surrounded it with hearts : )

But today my back pain is quite high. It hurts when I move the wrong way. It pinches, it pulls, it burns and aches.

I have thought about rating my health each day on a scale of 1-10. But the problem is that with MS how I feel from minute to minute and hour to hour, never mind day to day, changes constantly.

I feel (close to) what I now consider wonderful, then miserable and back again before lunch, and then before dinner, and then again before bed. Up. Down. Down, down, up.

With Gilenya I am hoping to log more Ups than Downs, but today doesn’t fall into the Up category. Still, I wait. I wait for the Ups, and I’m grateful for each extra second that I can label that way.

But the pain today (a second day of rainy, foggy weather) is too high to rate myself a 7. I wanted to do more today – but I couldn’t.

My dad once told me that when there are more Downs than Ups in a relationship that it’s probably time to end it. I sure wish it were that simple. Instead, I am even more loyal, more dedicated to making it work, more desperately working to figure out the best formula to create the Ups.

It’s an abusive relationship that I can’t escape. So I have to find a way to transform it, to teach it to love me, and to find a way to love it in return, or I must suffer the consequences. I must play the role of the battered woman. And that is so not me.

Angels 101

“This doesn’t belong to you. Not to you. Someone made a mistake. A big mistake,” my mom sobbed into the phone one night.

I knew what she was referring to immediately. She didn’t mean that one of the doctors had made a mistake. She meant someone, one of those beings who make the decisions … you know, up there … had gone wrong in their delivery of my destiny. And truthfully, I had already thought this possibility through in quite some detail.

Maybe there had been some kind of fallen angel, too busy to carefully read their orders. A spirit guide who had gotten lost themselves … Maybe the MS belonged to a different vibrant, Italian, 27-year-old with the same name. Maybe she was more deserving, or maybe she was in dire need of the unending lessons, the constant struggles? Growing up in a Catholic family, pain and sickness meant punishment. But what had been my sin?

As naïve as it sounds, there was a thought in my mind that once I got married and officially changed my name, the mix-up might have been discovered. That poof, it would not belong to me anymore. Besides, even if it hadn’t been a mistake perse, I was a new person, with a new life and a new name to prove it. Didn’t I deserve a clean slate? My sins to be washed clean?

I wondered if maybe the day guardian angels had been assigned, there weren’t any left. An angel shortage of sorts. I pictured It’s a Wonderful Life and actually wished that angel, Clarence, had been mine. We all know he got his wings.

But even my day dream was interrupted. I saw not Clarence, but an image of a biker angel: you know, the one who slept through Angels 101, smoked through the gates, talked on his cell phone during God’s muster. The one who taught the other angels to be rebels, to push the envelope, to test the boundaries.

He was clearly nothing like me.

Check Please?

When the envelope
arrived
I knew it was a bill
for my Gilenya observation

When they watched me
and checked my pulse
twelve times
in six hours
using a machine

but there is no part
of me that expected
Amount Due to read
$2,500.00

I mean,
we know
the cost of MS
is everything

and the price of health
is truly something

so we would
pay
anything
to be free
of It

but we’ve already
given It
so very much

and sometimes
it seems
(if we aren’t careful)
It will
keep taking

and leave us
with

nothing

My Scarlet Letters

“No man, for any considerable period, can wear one face to himself, and another to the multitudes, without finally getting bewildered as to which may be the true.”

The Scarlet Letter, Chapter 20, “The Minister in a Maze”

(flashback to October 2009)

When I consider revealing my secret, I consider it soberly. How will this person react? What is the probability that they already know, that if they don’t know, they will find out soon from someone other than me?

It’s strange when someone knows, but I wasn’t the one to reveal the secret. It’s an understanding. A consistent look of pity. People don’t know how to act, what to say. Some may forget … good for them, I wish I could. I’ve tried, but it hasn’t worked out that way.

So I have mental lists, ongoing lists. You know, I told you. You know, you were there. You know, someone else told you. You probably know from so and so. You don’t know, I’ll probably tell you myself. You don’t know, I hope you never find out.

I’m a pretty good judge of character, I tote that skill around and have for years. But the irony of course is that now I have to be right. If I tell the wrong person, things can go badly. I wonder about my boss. He seems like a decent person. But his role to is to literally, watch me. That makes me anxious. He doesn’t know now, so when I’m tired, he probably thinks, Well, she stayed up drinking or something. Not, Wow, that really sucks to be her. How horrible. She’s not doing her job very well today, must be the MS. So, I have been carefully weighing my choice.

It sometimes does affect me when I read. My eyes…. They have been permanently altered. Permanent. Not like the old 80′s hair style, like, forever.

Sitting in my boss’s office on a Monday afternoon, I couldn’t pay attention to his words. The hallway was silent. My mind wandering to the pondering. What words would I choose?

“Uh-huh,” I hear myself utter. But I had no idea what he was saying. As the conversation died down again, I physically couldn’t get up. I sat there, probably looking like a doe. I felt small, helpless.

“So,” he said finally, “What’s good?”

And that did it. Good? What’s GOOD? “Well, not good, exactly,” I choked out.

The tears welled-up almost immediately. “Um, there’s something I actually wanted to tell you, but it’s hard for me to talk about.” I looked at the floor, the books, my shoes.

“Ok?”

“Well, I was diagnosed with, um, M.S. three years ago … And it’s been really hard.” I looked. I waited. He looked. He waited. He made an, ooohh, sound. It was like a quiet lightning bolt. I could see his mind putting puzzle pieces together.

“Yeah, and so, it’s been really hard. That’s why I went to Boston last week. That’s why my circulation is all messed up, and my eyes, from medication I was on. So, um, I thought you should know.”

“Ok, well, I’m glad you told me. Look, we can work around this.”

I wish I could work around it. I’ve been trying to work around it. Make a new path. Find an alternate route. “The only other person I told here is Jason. It’s just, people judge you, you know? They treat you differently. And I… I wanted people to know me first.”

When I left, a weight had been lifted. And my stomach was in knots. What did he think of me now? How would it change my life? Could I stop being two of me at work? I think I liked the façade more than I realized. Because I wanted the not-sick-me to be the real me. And once I told the truth, she was gone.

The Power of the MD

the power

of “you have”

is much bigger

than

us

if you

let it be

but they

know

so little

they

do

so much

harm

with their

“you have” s

with their

“take these”

and their

“try those”

but they

are powerless

they

are people

they are

only

just like us

they

make mistakes

get sick

are scared

to die

and they

definitely don’t

have the answers

so please

don’t expect any

they

merely guess

they

(sometimes) think

they

deduct and process

through elimination

but they

have no power

are not

(even anywhere close to)

God

Ah, what’s up doc?

(flashback to December 10, 2006)

Last week when my big toes became numb, I didn’t think much of it.

I thought, my new adorable fuzzy boots are uncomfortable, but I love them. They are chocolate and warm and very snow bunnyesque and I deserve them, even if it is the time to shop for others. That was Thursday I think, but now I can’t be sure. Friday all my toes were numb, and Saturday my toes and bottoms of my feet. Sunday was the same, but I started to worry. Monday morning I made an appointment to see the doctor on Wednesday afternoon. Monday night it was my calves too.

Tuesday morning, December 5th, I placed an emergency call to the on-call doctor at 6am. Should I go to work? To the hospital? He said, “try to and see someone today” but didn’t sound too concerned. “Is there a reason that you are calling me this morning? Right now?” Yeah, I’m becoming numb, I thought someone might want to stop it.

Donovan on the cell sounded worried. He snapped me out of it, and it was the first time I realized it could be serious. “It’s moving?” He said. Yes. “But the doctor said…”

No,” he said, “that doesn’t sound right…”

And then I realized, it sounded very wrong. I hung up with him and the sensations almost immediately traveled to my ass and thighs. I simultaneously took the Plainville exit, called a substitute, and called Kelly to give her some lesson plans for the day. By the time Kelly called back I was just a couple of miles from the emergency room. I parked the Beetle in the ER parking and walked in with my numb legs.

I was the first one on Tuesday with an emergency it seemed. It was not quite 7:30am. Maybe everyone else had emergencies earlier or later. But this was mine.

The man who took my information looked respectfully at me. That happened often when the occupation blank needed to be filled in somewhere. Yes, I teach high school. Yes, all grades. No, it’s not scary. Yes, I like it. Thank you. Please help me, my legs are numb.

The nurse asked me about recent activity. I moved this past weekend, but… That seemed to explain it for a few minutes. A pulled disc a twisted disc a slipped disc. Some kind of disc related issue. But this started last week, before the move… my voice was so small.

Dr. John was a kind man, funny. But in the end, quite useless. I asked him to tell me when it was time to call my parents; they didn’t know I was here. When he told me I was going to be admitted, he said it was time and handed me his phone.

He had trained to be a brain surgeon, he told me as I lay on my side waiting for the spinal tap. Ok, I said, then you are like McDreamy. He had two residents in white following him around and being very Meredith and Christina, but much less intelligent. Meredith (that’s what I called her) said she needed protection in case the fluids went flying during the spinal tap. I wanted to hit her then. She was uncomfortable and clueless, and maybe a lot like me.

But today, this bothered me. It wasn’t endearing to have a girl who reminded me of my fear standing behind me during the spinal tap. The first one of my life. “It’s probably a virus in the spinal area. They come and go, it’s nothing to freak out about. We won’t be shoveling dirt over you anytime soon. You look like a million bucks.”

Yes, Dr. John really did belong on Grey’s Anatomy. Who tells a 27-year-old panicked girl anything about shoveling dirt in an emergency room with numb legs? He was the one who first said to my parents, “It’s not MS, so you can get that out of your heads right now.”

The MRI was never something I feared, even despite that time in Florence when I almost passed out from claustrophobia within the Duomo’s spiraled cement walls. But automatically, when the MRI started, I tried to meditate. I made up stories in my magnetically imaged mind to correspond with the noise. Ok, I’m at Mohegan Sun with mom and dad, I got lost, no, I got sucked inside the slot machine. But the good news is that this machine is a jackpot winner. Out on the street. A busy city street, probably New York, which I hate. Jackhammer. The roads need to be fixed. I need to be fixed. Jackhammer out the numbness. The tall plastic head shield came on after the first 30 minutes. “Can you hear the radio well enough?” No. The holiday songs swelled up into my ears, and I wished I hadn’t tainted such joy and innocence with a 90-minute image of my damaged body. Let me keep Christmas.

Heat in my head, molecules jiggling like the car massager on my back. I imagined them lining up and telling my story. But as I imagined all of this, I never imagined what the molecules would line up to reveal. Jackhammer, slot machine, jackpot, massager. Jackhammer, slot machine, some jackpot, massage it away.

And finally, in your flimsy hospital gown, you don’t want to see the pale, motionless faces of your parents in front of you as the doctor says, “You have probable MS; the MRI shows lesions on your brain…”

You hear the GASPING in of air like you were sucker punched in the gut. And you just were, really. It was your air, it escaped out in front of you and you can’t put it back in. It sits there in front of you, giving you away. It sits and hangs, thick and tangible, in front of mom and dad, beside the hospital curtains, and next to the Irish neurologist with her brown leather medicine bag. You want to snatch it up and shovel it right back into the hole it came out of. Rewind. Put it back. Not GASP. Not hear the words. Literally, take it back. Hear nothing at all… Just… Start over…

Gilenya iZzz – Day 21

Gilenya iZz

focusing my thoughts

connecting the dots

joining the disjointed

particleZz

Shezz

doing her job

a true worker bee

in fitting yellow stripeZz

Her colors are dull

because she iZz patient

sly with a clear target

she does not rush

the job

or leave stingerZz

behind

Of course Gilenya

iZz a she

taking multitasking

to a new high

She defineZz

efficiency

the rain is gone – day 20

 

Have you ever opened up one of those capsules, just to see what’s inside of the yellow and white Gilenyated plastic? If you haven’t, then I’ll tell you what; your fate is in the hands of some white powder. That’s it.

I’m not sure what I expected to find: yellow crystalized beads or pink sprinkles or maybe fairy dust.

Life always surprises me.

Today, driving back from Connecticut I noticed something encouraging – I could see clearly, much more clearly than I have been seeing lately.

And although I continue to sleep in 10 to 12 hour clips to feel rested, I can tell you this – right now, I’m not getting worse. Maybe that white powder needs all of those hours of dreamless sleep to get its job done without my brain constantly interfering.

ZzzzzZz. I just wish I had the luxury of sleeping in everyday. But teaching makes me happy, fills me with purpose, and of course, pays the rent.

Six more weeks of work before my students graduate…I wonder what I’ll be writing by then?

Gilenya Day 17 – Is it helping?

My mom keeps asking, and I keep avoiding. I don’t want to say yes, for fear of jinxing myself or seeming ungrateful for the improvements I have seen. I don’t want to say no, for fear of it being true.

Yes, I do believe it is helping. But at Day 17, maybe I was hoping for more. And I wonder if you also have been hoping for more? From me, from my blog, from my documented testimony in healing?

I have gone to the gym twice this week. But is that a result of the Gilenya or just my own selfish motivation? Last night, after a 2.78 mile journey on the elliptical, fatigue hit harder than ever, and I literally struggled to keep my eyes open past 8:30pm.

I woke up at 6:30am, and I thought, Well, I guess I wasn’t that tired after all. I dozed for what seemed to be a minute or two, and I when I checked my phone it was 9:30am.

Many of those on the support page have commented on how great they’re sleeping. That’s a positive effect, right? Or is it a negative in disguise?

Exhausted with dull, yet throbbing back pain was not the way I envisioned the start of Day 17.

But still, it’s early on, isn’t it? Am I being an ungrateful and unrealistic bitch?

I still get light-headed about an hour or two after taking it. The side effects still vary. I haven’t been having the hot-flashes this week. I have had pimples. I haven’t been having the chest tightness. I have had shooting leg pains. So it’s still getting settled in, right? Acclimating itself to my particular pains and problems? Fixing something here, then working on something else over there?

For this reason, I still wait to feel something after I take it. Something, anything. And I realize that many of you may be wishing the opposite. But I want to know it’s in there, doing its job.

I guess today I have a lot more questions than I have answers.

Wait, is this an MS blog?

Yes, it is, and no, it’s not. It’s my blog, am I MS? Yes, I am, and no, I’m not. It’s more complicated than I thought. And probably you thought when you were first diagnosed too.

On the elliptical today I realized that so much of MS requires for us to reinvent ourselves. We are the definition of evolution and survival of the fittest, aren’t we? That foot hurts, this one gets used more often. My eyes are blurry, my sense of smell is strangely heightened. One day I smelled parmesan cheese being opened from upstairs. We don’t evolve slowly, we evolve every instant. And my hope is that Gilenya helps me to reinvent myself into the person I always envisioned at age 31. A writer. An author. A professor. A wife. A mother even. But I backed down from these dreams and goals. I’ve applied to and been accepted to PhD programs, but I have never started.

And now, I want, I need, a fresh start. Am I putting all of my eggs in one Gilenya shaped basket? Sure. But didn’t I put them into the Copaxone autoject? The Rebif needle? The IVIG and steroid drips? Yup. And so have you. Maybe that’s why we are so full of fatigue. We are required to continuously renew hope. Not day to day or week to week, but second to second. It’s enough to exhaust anyone.

Will I forget that this is an MS blog? Will the scent of alcohol ever stop reminding me of needles?

(beware of) The Land of Make-Believe

remember the train

that carried

the puppets

to The Land of Make-Believe?

the hypnotic tune

that warped us

gently

into a world

where anything

was possible?

there was a man

who quite deliberately put on shoes

and a lady

who wore ridiculous princess garb

and somehow

in calming tones

their suggestive voices

suggested that our world

was simply

simple

there was even a

peachy prince

(there must have been)

and a castle

and a king with

a beard

who waved his

puppet hands

and spoke quite royally

through his puppet mouth

and we

watched in awe

our own mouths agape

unable to turn away

without our invisible

strings

ending up all kinds

of

twisted

Gilenya+wine=hangover

It seems that I have an addictive personality…and that blogging is my new high. That, and Gilenya, of course. And yes, I am sore from yesterday’s adventure, but only normal gym sore, not MSery sore.

I wanted to go again today, I really, really did, but I must confess that Gilenya + hangover = one tired and relatively useless blogger. But the four glasses of wine were a consolation prize since we lost our pool league finals. Rationalize it any which way, our addictions are what keep us going and coming back for more.

I have just taken Gilenya number 15, and if you have not yet seen Limitless I encourage you to sprint to your local theater; and take your Gilenya with you. Plan to take it at precisely the moment that Bradley Cooper (ironically the star of The Hangover) takes his magic pill, and then relish in the beauty of it all.

Crazy? A bit. But with MS we have to keep pushing our Limits. I really did label my Gilenya pack Limitless with a black Sharpie. Try it, you’ll see : )

(Sarcastically)Sorry

pardon me if

I walk a bit too slowly

or take up a bit more time

than you expected

and excuse me if

sometimes I forget

or really just

don’t feel like talking

and I’m sorry

that you don’t really

get me

when sometimes

the sky is falling

down

(only on me)

and forgive me

please

for depressing you

with the content of

my blog

my words

my life

I apologize for

only doing the best

I can

Gilenya & 150bmp

So what I realized today is that someone got the warning label on Gilenya all wrong. It should read…Caution: This drug may cause intense happiness, more energy than you’ve experienced in years, and overall create an addict out of you. And to think that I had considered NOT taking it?

And yes, I’ll be your Happy Hamster and Guinea Pig, because today I sprinted 3 miles on the elliptical, just to see if I could. My heart rate shot up to 150bpm, and I thought, well, if I die now I hope someone showers me and straightens my hair. I wondered what they would bury me in.

But I am home safely, and I sweat a lot. I loved every second of it. The sweat dripping, my heart racing, the music on my iPod blaring. Of course I am out of shape, and it took me 45 minutes, but whatever. I actually closed my eyes on the machine and imagined myself in a bathing suit 2 months from now…on our 2 year anniversary trip to the Bahamas. I closed my eyes again, and I imaged myself 10 years ago at my old gym in the best shape of my life. I could imagine it. There was no pain in my back, no aches in my neck. And I felt good enough to keep going. Maybe, after all this time, it had all been a nightmare. But when I opened my eyes, I was still 31. And I heard my rational side whisper, “You better not over do it…”

Weight has been an issue for me, and probably for most women at some point in their lives. But MS has exacerbated that. You see, when I was diagnosed I was a relatively healthy weight…130ish. I had spiked up to 145 in college (the freshman 15) and lost it by junior year, weighing in at 125 through dedicated use of the elliptical machine. But it crept back up…and when I was diagnosed and on IV steroids for 10 days at Christmas time, I didn’t see any reason to deny myself every single Christmas cookie in sight. After all, I was dying, wasn’t I?

But after that, my boyfriend of 8 years left me…well, didn’t return to me from a year long stay in Tokyo. And that, combined with the stress of being diagnosed and a whole lot of Provigil required to live and teach high school students = me weighing 117 pounds. Truth be told? I was in my glory. As long as I didn’t have some other deadly disease (my hair was also falling out in chunks) this was as far as I could see the best result of having MS. I bought size 2 jeans.

Shallow? Of course. But I was thin and if I was going to feel like shit, at least I could wear anything I wanted to wear and look better than I had in years. That to me is the enormous irony of the disease – how great everyone says you “look”. It’s almost as if they are questioning the enormity of your pain.

When I met my husband, I weighed about 116, and I was drinking my weight in Vodka. I ate pretty much nothing, not because I wanted to lose more weight, but because I felt nauseous all the time. The thought of food sickened me. The smell disgusted me.

When I switched to Rebif and then to the IVIG my weight slowly crept back up to 140, and for 20 days before my wedding I ate tofu and forced myself to the gym. I cared more about the wedding photos and wearing my gown like a “normal” bride than the back pain, and I eventually got down to 130. But again, the weight crept back up.

I hate that people think I’m lazy, but I guess MS has made me seem that way. I want to change that. I want people at my gym to again say, “Oh you’re the Elliptical Queen!”

Last night about 2 hours after taking the medicine I started having pain in my eyes, and soon after, shooting pains into my right leg – the one that has suffered the most from the MS. And I’ll tell you what…I actually wasn’t nervous. I was elated. I just said, “Hmmm, interesting.” My husband didn’t blink, so then I said, “I have pains in my right leg, shooting pains…I think it’s fixing it.”

And when I woke up this morning, walking on my leg was a bit painful, but somehow it still felt better – stronger, less numb. It took me three days to talk myself into going to the gym. But I went. Tomorrow I may be too sore to walk, but today, I soared.

Day 13 – Gilenya and Construction

Yesterday was challenging because of the simple fact that some Spring Cleaning was in order. Of course this task can be overwhelming for anyone, but for me, for us – it’s overwhelming to the exponential degree.

I was sitting on the floor, in the midst of a pile of clothes, my MS was getting the best of me. I was tired, my head was foggy, and my back hurt. But I kept at it, putting clothes away, piece by piece. And today, when I woke up, again I felt a little less tired, a little less pain. When my husband rang the doorbell three floors down, my heart didn’t plunge into my toes quite as severely. And on the way back up those stairs, I hopped a little, just because I could : )

Built Around

Minute by Minute

the day is built around

successes and failures

pains and moments of feeling Pain-Free

headaches then Advils

temporary reliefs and

delayed disappointments

that Day by Day

the week is built around

tentative plans (if you are up for it)

and quiet dreams (that you hesitate to make)

followed by what ifs

and maybe somedays

that Month by Month

the Years are built around

hope and faith

that you try

not to let it

tear down

Gilenya Day 11; MS Day 1570

Well, last night at about 10:30pm I took my Gilenya. I’m not sure if it was my imagination or not, but around 6pm I started feeling a little woozy and my heart beat seemed more noticeable. This might have been related to being dehydrated (I often drink Pedialyte to fix this problem, which I discovered worked wonders after a bout with the stomach flu). However, I guess it could have been the Gilenya?

I want this medicine to work so badly that I’m willing to openly ignore any side effects. I am openly in denial, and I plan to stay that way. My track record with side effects has been touch and go, and as a result I’m pretty gun shy.

I was first on Copaxone, as I’ve mentioned, with relatively good success. It was my first drug, and I was on it for 10 months before my first relapse, but I had really only been in remission for 2 months. So this neurologist said, “Wow, you’re 28? And you have MS? At 28?” Uh, yeah, that’s why I’m here. Don’t you, a neurologist, know that this is a common age for MS to be diagnosed?

People can be so damn insensitive. Doctors can be so damn stupid; it’s scary.

”Wow, that’s horrible. If you were my sister, I’d tell you to switch to Rebif.”

What an ass.

Anyway, I never went back to him, but I did switch to Rebif.

It helped a lot. I know it did. I felt good once the horrible flu symptoms started waning (I have been SO relieved not to have severe flu symptoms with Gilenya). I have had an upset stomach here and there, but nothing like the Rebif.

I didn’t tolerate the Rebif very well, and I eventually ended up manually doing the shots so that I could control the dosage. You never think you can give yourself a shot with a needle 5 inches long, until you have to. Then you do it.

But the Rebif caused other side effects that I could not ignore. I wasn’t sure if my heart palpitations were reality or my hypochondria acting up, but I was sure when I went my eye doctor who found retinal hemorrhaging related to the interferon that it was time to switch…oh, not to mention the Reynard’s “Phenomenon”. The name alone cracks me up. But the symptoms aren’t so funny: blue fingers, swollen, purple toes, patches of raw skin that get infected due to poor circulation. Lovely. I had to laugh when I told my family and friends that I am a walking phenomenon; at least purple is my favorite color.

My “specialist” said he’d never heard of an interferon causing retinal hemorrhaging…that was a red flag. There are articles all over the internet linking the two. So I stopped the Rebif from the research I found myself, and based on the “specialist’s” recommendation, I started IVIG, Gammagard – which is made of human blood plasma.

I knew this stuff was dangerous when the company sending me a nurse said that they would stay for the entire two hours. My anxiety was high every time, but in two years I never went into anaphylactic shock. In fact, out of the countless nurses who came to my house, only one actually checked to see if I had the EpiPen that I needed to save my life. He quickly became my favorite.

But after two years, I was feeling worse. My fatigue level wasn’t bad, but I kept having intense pain in my back and neck that I sometimes would treat with ice packs or essential oils. I was on IV steroids twice, and one bout left my right left stiff and sometimes numb. I knew that I wasn’t doing enough.

So although I was afraid of trying something new, it wasn’t a question of whether or not I should, it was just a question of what to try next.

I flip-flopped back and forth between Gilenya and Avonex plus the IVIG. I even received the Avonex training kit, and I practiced “plunging” a fake needle into my muscle…

But I kept being haunted but the idea of Gilenya. Well, haunted may not be the best word, more like taunted.  You can take a pill. No nurse. No delivery. No EpiPen. No needle. A simple pill.

One day, during the three months of waiting be to approved for Gilenya, I said to my mom, “If I had just been diagnosed, and we were presented with all of our options, I think we would have gone with the Gilenya. I have to go with it now too. I can’t let my fear of what’s happened stop me from having the courage to try.”

And so, I told the Avonex representative that I had changed my mind. And I asked her not to send me any needles that would require plunging.

So here I am, on Day 11. And when I woke up this morning, after having a solid 7 hours of sleep, I noticed something very peculiar – I wasn’t nearly as exhausted.

MSWoman (nothing like Batman)

Is it horrible of me

To wish this on someone

For one day?

Not forever, like me,

But 24 hours

of MS…

So they can

Try to walk

In these shoes

Before judging my MSsteps?

I used to think

This was an evil plot

And myself a villain

For even considering it

But now I realize

I am no villain

(not even MSWoman)

Instead, I’ve discovered

that I am only

Human

So I forgive myself

for my desire

to sometimes share

My MSery

with those who

have their definition

of misery

all wrong

Day 10 – the Gilenya challenge

This morning I stiffled the urge to take the pill, and I decided to wait until tonight to try and help with the fatigue. My mom texted me, kindly reminding me to take the pill tonight. I texted back, “I’ll never forget.” And for me, and probably for many of you, that’s saying a lot.

It’s funny, one of the articles that I read about Gilenya included a doctor, warning of the potential negative effects of MS patients becoming complacent, and not realizing the importance of taking their pill each day. That pissed me off.

Clearly, this doctor does not have this disease. Clearly, they haven’t had any disease. Because if they had, they’d realize that when your life depends on something, you don’t forget. And if remembering to take the pill is our biggest problem, then we have won.

Superstitious Lamb

Into the doctor’s office

I carried my little lamb

The same one I’ve slept with for years

The same one I’ve cried on and clung to

is the same one that carried my Gilenya pack

in its back pouch for weeks

waiting for my “navigation” to be complete

And it carried my Gilenya pack,

this lamb, with one eye unraveling,

into my observation

because

(if nothing else)

this lamb

might be my Salvation

and I hoped

that if I slept with this pack of pills

inside of this lamb

to prepare ourselves

(for our potential sacrifice)

that together we might

live on

Day 9 on Gilenya

My first dose was on Tuesday, March 15th. My dad always said that important things in his life have happened on Tuesdays. One of those Tuesdays was the day I was diagnosed…December 5, 2006.

Today is Day 9. The first couple of days had me glowing and smiling from ear to ear. I couldn’t believe that I felt so incredibly “normal”, that I could finally think about something other than not feeling well. But it happened, and it lasted a few days before I started to feel some familiar symptoms creeping back.

But I am very hopeful, and I want to share my hope with those who are also on Gilenya or in the same situation of choosing a drug that could save you. We know the risks, but there are risks either way.

Up until today my side effects from the medicine itself have been minimal. On day one I had a headache during the observation between the fifth and sixth hours. But my heart bounced back : )

I felt a little light headed and dizzy, and I have felt that way on and off for the last nine days. I was hesitant to “mix” in anything else, so I just started taking my Ritalin again yesterday. And I’m still kickin’ … but I still get a headache in the afternoon hours.

After reading some suggestions on the Gilenya Facebook page, I am going to try taking it tomorrow night instead of in the morning. I am hoping this will help with the fatigue until the magic starts : )

Stay tuned…

Morning Fog

The morning fog lingers

Surrounding my brain

In thick wisps

Perfectly content to stay

All morning

Curled comfortably

Into the crevices of my cranium

Which gallons of coffee

Cannot lift

Making this poem

Seem impossible to write

Making that cup

Seem impossible to reach

Making this day

Seem impossible to start

hidden

In the bathroom drawer
Is a package of pills
In pink and orange
That I labeled Limitless
I found them hidden
Away
He hid them
And I wonder if I should hide too
But I think it still might find me

MS Miss, pleased to meet you

She seems

To be

Wound up tight

And she is

from the Outside

In

But from the Inside

Out,

She Unravels.

Less It

I want to Shovel

all

of the 28 pills

Into my mouth

Today

So that I can get

28 times better

28 times faster

And be

28 times

More me

and

Less

It

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s