Cover Story in this week's Mountain View Voice

December 2, 2010

'Some days are worse than others, and today isn't the worst, but it is far from a good day. Since she first began noticing symptoms, she has had periods -- which can last for months -- when she has felt right as rain. Of late, however, she hasn't left the house, or her bed, much at all.

"I don't have any plans," she says in exasperation. "Everything I've ever planned in my life got cancelled."'

To read the article, click here:
Sick and Tired of Being Sick and Tired by Nick Veronin

Laura Hillebrand, author of Seabiscuit, sufferer of CFS speaks out.

"'You have Chronic Fatigue Syndrome,' he said. He explained that it was one of the most frustrating illnesses he had encountered in his practice; presented with severely incapacitated patients, he could do very little to help them. He suspected that it was viral in origin, although he believed that the Epstein-Barr virus was not involved; early lab tests had liked the virus to Chronic Fatigue Syndrome, but subsequent research had demonstrated that some patients had had no exposure to the virus. He could offer no treatment. Eventually, he said, some patients recovered on their own.
'Some don't?'
'Some don't.'
That night, for the first time since March, I didn't dream of being an athlete. I dreamed of being ill. In my dreams, I was never healthy again."
 
 - from A Sudden Illness - How My Life Changed, by Laura Hillenbrand

www.cfids-cab.org

Newsweek addresses legitimacy of CFS

For years, chronic-fatigue syndrome has been dismissed by the medical establishment. Now researchers may be closing in on a culprit.

http://www.newsweek.com/2010/11/28/could-a-virus-cause-chronic-fatigue-syndrome.html#

I am trying to remember

I am trying to remember
what life was like before CFS.
how it was to
do things
watch things
climb things
without worry or concern.

I'm trying to remember what it was like
never to have to construct a plan B and an emergency kit
for every outing
to say "Yes, I'd love to!" to any invitation
to dance to pounding loud music
or float across the floor in a ballgown
to hike up mountains
and feel the strain and glorious pain in my legs
rewarded by magical, far reaching views
to swim in the cool of the ocean
and feel the water wash through me.

to be in crowds of people and hear the hush
before something wonderful is about to happen
to be in a swarm of people and language that is different
dizzy from the richness of a life and enthusiasm
painted by a different palette of colors.

I think it's freedom that I remember.

And what will I remember from now?
I hope to remember the freedom to live by my own clock,
exempt from the frenzy of silicon valley speed.
I hope to remember a life brimming
of art, animals and love.
A connecting of people with hearts
passionate about a common goal
the healing of me,
the healing of all of us.
Of squeezing the life out of each day
even if it's watching the sky stroll by my bedroom window
A living of paying close attention to myself, to others
and making decisions mindfully and in my own time.
That however hard they spin you, tornadoes pass
and love will find you wherever you may be tucked away.

I hope I will  remember. 

just weather

i am the sky.

and the feelings
the huge feelings
that rattle in my heart
and shake the very roots from which i grow
mere thunderstorms passing through.

how easily we are fooled into believing
thoughts carelessly grafittied on the walls of our minds.

how carefully we must remember to remember.

What Were You Taught in Med School about CFS?

A dear friend just wrote me that she has been reading all of my facebook posts. She said that they really helped her understand more about the disease and made her a better doctor. She said she was disgusted with what she was taught in med school. So I asked, her,
"What were you taught?"
"You're not going to like it," she started out.
"We were (and I bet most med students still are) taught that people with CFS, fibro, vuvlodynia, interstitial cystitis, etc - are basically crazy people with a psych problem and some physical components."
(Chicago Medical School, circa 2005)

It all starts to make sense.

The most recent shockingly unsurprising, appalling visit to the emergency room

written on September 19, 2010 at 12:48pm

I'm weakened from the most recent episode at the ER where they treated me like crap as soon as they heard that I have CFS. They shot me up with all kinds of pain meds for my brain shattering 30+ hour migraine and bone cracking body pain. None of them worked, but only made me super drugged out and then they literally threw me out in less than ten minutes after giving me the last shot.

The ER doc told me that my health problems were not viral (Does anyone in the medical field read the science section of the frikkin news???!? CHRIST!) and needed to be "dealt with at home." Infuriating.

So my hope is I tell all of you about this and you tell everyone you know and maybe it leaks out to doctors so they treat all of these very sick and suffering people with some dignity.

Private pain -> public purpose.

Thanks.

comet

written on June 22, 2008

it's sunday evening. i sit by the open window and i write. i write to drain my head of it's thoughts. to take cascade or what's the scrubby stuff in the green can called? to the insides of my pipes and my roots and my soul and cleanse. it's a cleanser i need. one that comes out in mini scrub brushes with blinky eyes and bristles that get up and in between. cleansers that go over the ugly and the painful and the filth and leave a trail of clean and pure.

i know i'm under here somewhere. 

Ugly

Sunday, October 5, 2008

I don't know if I've ever felt I needed to write as much as I do right now. I've been feeling that way for days. It's not words in me, but thoughts and feelings crashing against one another like the wrestling of waves. There's been this feeling, or a hope at least, that there would be a quieting in the laying of words, the stringing of letter and punctuation.

I don't know. I am lost and have been for a while.

I saw a movie recently in which he said, "If you do this you will be lost forever," I guess implying that if we do bad things we lose ourselves. I think sometimes it has become hard for me to know the difference between being the doer and the receiver of bad things. After a while, the feeling is the same. Lost. You don't remember where your heart lives and your organs are buoyed up somewhere around your shoulders because the rest of you is filled with grief and fear and black and ugly, shame and hate. Rage. Whichever it is, it's too much. Too much to stay and so you vacate premises. You disappear on yourself. You kick and scream at the world around you or you don't talk to it at all. You stop calling and checking and answering. You hate everything and there is no sunshine in your eyes.

Shhh. The writing is too fast and the feelings are pushing my fingers around on the keys. You have to quiet yourself enough to believe that there is peace.

I can't. I feel like I could write myself into a hurricane. A tidal wave. A fear so tremendous that my feelings would fill all of me with blackness and and come crashing out of my eyes, a cascade of black ink that trails across the floor and pools ugly stain into the carpet. I have never been so afraid so much of the time in my life.

There are moments when I come back. Glimpses of me. Class. Sitting in the yard with my dog. Talking to some guy on the street about his chihuahua. I can still sometimes hear the ringing of my wind chime reminding me,"It will be ok." I don't necessarily believe it, but I can't argue with something as sacred as wind.

How much sense does that make.

Peace and compassion to all living beings.

I guess I'll try writing again tomorrow.

What I Learned In the Last 3 Days about Hospitals and CFS

September 25, 2010 at 10:54pm

1) If you have a serious, controversial illness and feel that your health and/or life are in danger, it is very likely that it is not in your best interest to go to the hospital.
2) If you do go to a hospital, do not be honest about your health history or mention this controversial illness.
3) If you are backed in a corner, and the truth of your illness comes out, the quality of your care will immediately plummet and every effort will be made to have you released immediately.
4) If you happen to have Chronic Fatigue Syndrome and the hospital finds out, you will more than likely get sicker and feel worse each day that you are hospitalized.
5) If you are having one of the shittiest days of your life, having strong, amazing family and friends around you is priceless.

Thank you Mom, Dad, Abby, Clayton, and Rochelle.

CFS is a Terrible Thing; My Stay at the Hospital

September 23 at 8:54pm

I've just been admitted into El Camino Hospital. CFS is a terrible thing.

 

September 24 at 4:00pm

physical therapy came in today to check my mobility. she wanted me to stand and i kept telling her i couldn't. she said i needed to try anyway. i got half way up and blacked out - crumpled to the floor. ridiculous.

 

September 24 at 6:09pm

Hospital update: they are unable to find a solution to my unmanageable pain so the next idea is to discharge me. Wha?!?!

 

September 24 at 10:56pm

Tonight my home nurse came to the hospital and gave me a bed bath and a massage. There are angels on this earth; of that I am certain. Good night everyone. Thank you for all your support.

 September 26, 2010 at 6:38pm 

They have put in a new system of gatekeepers called "hospitalists." These are the 'doctors'  that decide if you are sick enough to be there. Yesterday afternoon, I had been given an incredibly painful shot (for pain ironically), screamed out in a piercing cry that I've never heard come out of me before, broke out into convulsions and then fainted. Moments later, my hospitalist  said to my family and friends that my vitals were fine, and I was medically sound (over my quivering body). She also said that she knew a lot more about my health than they did (she had spent about 7 minutes talking to me total, all of which was explaining that I was not sick enough to be in the hospital). This is the state of medicine now. They pulled out my IV, tossed my limp body in to a wheelchair, and sent me to the psych unit.

 September 26, 2010 at 8:14pm

I fainted this morning in the psychiatric unit. The nurses panicked as they are not trained for that sort of thing on their floor. I was on a bedside commode (toilet) and hung over like a rag doll for quite a long time as no one knew how to move me. The nurses were telling me just what I had told the doc on the med floor. They were not trained nor equipped for such situations. They actually asked a friend of mine to put on a pair of gloves and help to pick me up (Can anyone say malpractice?) I was discharged from the hospital hours later.

And so, my back is wrecked as is the rest of my body. I am significantly sicker than when I went in along with the bitterness of such mistreatment from my last stop for help in dealing with my health problems. I'm at the end of the line for pain control, even my own doctor agrees with this. There is nothing else out there that I haven't tried. CFS treatments are still in prehistoric times and I am far too weak and beat down right now to endure any kind of experimental treatment.

So what can I do? Throw it in and kill myself? No, I've decided. Perhaps, this string of recent events is my opportunity to tell this horrifying story of medical neglect to a greater audience. That's where you guys come in. Lawyers, journalists, activists, connections to people who know people that will be heard, please let me know what your thoughts are on this.

If my entire adult life is to be spent like this, there is no way I'm going to let that be in vain or wasted. There is a story to be told here and change to take place. It's not my story but one of millions of people with CFS who are petrified of doctors and hospitals as they have been through all this as well.

I spoke to a CFS patient the other day. She has not left her home in nearly 30 years due to CFS. That's not ok with me and really, it shouldn't be ok with anyone.

the chirping of the night

written November 2007

I sit on the cold granite
in my worn jeans
in my worn self
and I write to the chirping of the night.

Sometimes, life leaves me tired.
This afternoon, I sat on the toilet
and wept into a crumple of 2-ply
still attached to the roll.
These are the things people do
when their brains are full
or their souls feel empty.

I never know where my keys are
and I never know how to tell people
that I'm sick and I'm okay
or I'm sad and I'm ok.
Or that I'm not ok at all.

It's night now and I'm outside
my thoughts floating to the moon.
Perhaps this will give them the freedom
to find their place in things.

I listen to the chirping of the night.

Rainwatchers

written February 2, 2008

We are the rainwatchers
He and I.

I see circles circling circles.
The single file line on the rim of the roof
Suspended like icicles
Like transparent angels
Like infinite promises
Quiet and clear.

He sees them better than I do.
His eyes are softer than mine.

He sees dancing and splashy fish
Bringing glowing plankton from the bottom of the sea.
The magic of the sun
Falling to us to be lapped up
And fill us full of belief in the way things could be
Or how wonderful they already are.

It is a festival, a gala, an extravaganza
The falling of the rain
for him
for me
for us
the rainwatchers.

Troll

written January 21, 2008

Today I am a troll.
I want all the people to go away
With their talking and talking
Like thumbtacks in my brain.

A small elephant stands sideways
With his big flat feet pressed
Into the sockets of my eyes.

Yesterday,
I was thinking to write a blog
about how much I like being Chinese
But I didn't.
I missed it.
Because I'm not going to do it today.
Trolls don't write that sort of thing.

Get off, I tell him.
He ignores me.

I love elephants
And small ones have a particular appeal
But I hate this one.
He's stubborn and mean.

Form Letter

written June 18, 2008

They sent me a form letter to send to the presidential candidates. There was a section that I was supposed to fill about about how CFS has affected my life. I write a paragraph that is supposed to show how hard it is to have CFS. My mood drops through the floor and into the ugly earth. To share how awful it is, to try to prove your suffering, makes it even more awful.

Something to remember.

A depression aches in my bones like the glaring of metal. I want to skip this feeling. It's anger and pain that is bigger than I am. There is not enough room for it in here, so it runs out of me and spreads across the floor.

I close my eyes.
I keep them open.
It doesn't make a difference.

sicker

I can't distract myself any longer. No Farmville or chicken blogging. I can't turn my face to the sun and tell myself that all is well because it is not. I am getting sicker. I am getting so sick that words like "anti-viral" and "overwhelm" are grafittied in my dreams. Nightmares really. Angry. I'm angry. I'm bottled rage that can't run it off around the block or push it out of me.

CFS Sock Project

The suffering caused by ME/CFS is mostly invisible. You don’t see us when we’re at our worst: many people with ME/CFS are housebound or even bedridden by the disease. We live in our socks. Now we’re turning our socks into banners. We can’t march with a banner but our socks—and a few healthy friends—can march for us, to call attention to this disease and the urgent need for funding and action.
www.sockit2mecfs.org