The Jewelry Cure

I find myself wearing all the jewelry I have, in strange combinations and changed repeatedly throughout the day and night. Rings, earrings, necklaces, bracelets. They are all presents from family and friends and my mate. I have been very blessed with their riches. They are my real jewels, these people with whom I have kinship.

Other medicines I have been using include

Hot chocolate
Chai tea with milk
Buttermilk biscuits
Soup

Hot baths with Epsom salts and herbs

Smelling lots of lavender, I crave the flowers and have surrounded myself with sachets

Also smelling peppermint

Cleaning the house as best I can, external harmony makes me feel better

Petting the dog and cats

Music in small doses

Lying still for brief moments and imagining a better future in which I am not held hostage by pain

Imaging I am on the treatment table and Olympia is working on me

Looking at art

Sticking stickers on things

Using up things around the house and not saving or hoarding anything, nothing is for “later”

Next up is to try to do some art project and to get some valerian root tincture.

Maybe to wear more make up, thick-like paint, to paint myself over.

And hope to do some art therapy. For the last 45 minutes I was pouring paint with goddesses that night, I was in that place where I did not feel my head. This is the goal. Go somewhere else, get so deeply into something the brain forgets itself.

Maelstrom

I keep wondering how I have gotten to this level of debility and while there is no answer I suspect a perfect storm of certain triggers occurred. I had already been in pain for years, and the last three months the pain had been pretty much nonstop. I tried the antibiotics which seemed to lessen me and make me sicker the longer I stayed on them.

Then I saw Dr. Chenitz and he elicited in me an agony and so since that moment something in my nerves has been deeply flared up.

Then Friday before last I went to the wonderful gathering with the goddesses and there was a little light yoga at the beginning. How I enjoyed the cat cow poses and then the motions of ‘washing the inside of the peanut butter jar with ones body’. But my body had refused to go the gym for weeks so why would it like any yoga? And then there was standing on the concrete floor for two hours while I was mesmerized playing with paint.

And then there is the chronic sleeplessness.

And then my period started, which is always guaranteed to make everything worse.
It is like a brutal intruder.

And then I start taking medicines, which are also not very medicinal for me.

The sea is sick. And it is me, and I am it.

My mind hangs on to the image of Miranda by John William Waterhouse. Long ago, in my early twenties, when I caught a killer case of adult chicken pox and lost my mind and skin to it, I had that on the wall beside my bed. My mind turns to it again now. Some of my only escape at that time, as I lay quarantined and plagued in the modern world, was to look at that painting, and to read Helen Thayer’s book about her trek across the North Pole. For a moment each day I was with the polar bears, as I lay there with my skin blistering off and my mind popping. Thanks to my mother who brought me that book, autographed by the author, and who checked in on me smiling each day, and took the photos of me I requested so we would never forget what a virus can do to a human.

Enter Steroids

I sleep between 6 and 10 am and awaken to severe head pain on both sides. It was never not there.

Dear Head, what do I do?

Shall we go to hospital? Take an Imitrex? Start prednisone?
Can you hold down soup?

I prepare myself for come what may.
The shower makes me feel better psychologically.
Water, soap, lotion, refreshment, splashing ions.

At this point I know I will probably have to cancel my trip to see my best friend this week. She is in RI and it is her birthday but she might as well be on a distant star that I can only see from the edge of my cave on another planet.

At noon on Sunday April 3rd I start the steroids.

I don’t like taking pills but with each one I swallow I say, “This pill is going to help me.”

Soon I feel anxious, queasy, dizzy, and very cold. There are floating swirling bits in my eyes. My head pain remains the same, severe.

But soon I also hear something stop screaming.
I hear something back off, retreat a tiny bit.

By 3 I am still dizzy and queasy and cold, and my head is very painful.
But I am no longer thinking about going straight to the hospital.

It is like the pain is still there, but I care less.

Let’s assume that is a good thing.

The Sick Apple

The Sick Apple

Not getting any sleep for weeks and years is not helping me.

I keep thinking my chronometer is broken. Like I have a tumor in my clock.
Or a wrench in the pain switch. Something is not moving or working.
Time is strange. I can’t count on it. It makes less sense as my pain has careened out of control.

By 5:45 Sunday morning, I have again been up the whole night.
I would like to start the steroids but I am so queasy and green and sour from pain.
Like a sick apple.

The failed vicodin and other drugs.

Rebound headaches.

Hemicrania continua.

Vicodin Revisited

Friday and Saturday are spent in a surreal haze of pain. The pills I have thrown at it do nothing. The Squish is back in my head and it’s like some demon is wringing my brain like a sponge.

Everything hurts.

And self pity finds me. At 6:45 pm on Saturday April 2, 2011 I begin to feel self pity.

When the movement and fizzing happens I feel queasy and it shoots pain down and into my right eye. But the pain has now decided to take over whole head and no longer lives on the right. It has opened me like a duplex. Now the pain is its own lousy neighbor.
And I have been kicked out.

“I may belong to death but pain you may not have me,” I tell it.

It doesn’t listen to me.

I decide I am ready to start taking banned substances in this, the Olympics of my life.

The doc has said take the Zofran the ER gave me to get the queasiness under control so I can start the steroids she has prescribed. I take the Zofran and it does nothing.

There is just fire in the right side of my head, a pain and a plundering, a serpent, it’s like a hurricane happens in there.

By 9 pm I am deciding to take the Vicodin I have not taken since 2009. I don’t dislike it, it’s just that it guarantees instant “coma” for me. It is so potent it alleviates the pain but really I just pass out. So I start with a half dose.

But this time it does nothing. At midnight I have had no relief in right side of my head. (I do think body feels a little better, more relaxed, but not head.) I take the other half and assume I will sleep. Nothing. 4 am and I am still awake and in severe right side head pain.
This week “intractable” becomes a permanent part of my thinking.

I had thought Vic would take the pain away.
I am up all night again.

I have gotten so tired that sometimes when I look at a clock I have no idea which is the long hand and which is the short hand. 4 pm? 12:20 midnight or noon? What does it mean?

What does time even mean?

Pain that cannot be reached.
What does this say about it?

I am in the realm of the ordeal.


(the photo is Zofran)

In too much pain to say the word Pain

I wake up and the pain is unbearable and there is a parade going on outside. Parades are loud. Really loud. The shiny gold and white firetrucks blare their sirens as they pass by our yard.

I used to love a parade.

Because the pain was starting to lessen last night I thought today would be better but my head and neck are screaming their heads off.

I walk around the house looking for something. Inventory my drug list. Think about the hospital. Seriously I often find myself looking at things like witch hazel, or leather treatment, or the cats Prevention flea and tick pesticide and wondering if it will work.

What could possibly be medicine?

I have pica of the mind.

I drink a coke with lots of ice. To combat the queasiness and the fevery nature of the pain.

Yesterday when the neurologist saw me she rolled my neck up and down and twisted it side to side. The roaring pain caused me to burst into tears, though it wasn’t a burst so much as a rock leaking water from its eyes. She said, “dizziness or nausea?” And I said both but what I meant to also say was Pain Pain Pain Pain Pain.

But I was in too much pain to say Pain.

So now today my neck is screaming and screaming and so are my shoulders.

The head never stopped screaming.

I suspect the pain is damaging my brain.
I try to tell people I need help, the pain is too great, it is destroying my tissue.
I did not get those spots on my brain just sitting around and eating bonbons, people.

Because I cannot think of what to take, I drink my coke and in earnest begin to clean all levels of the house. Vacuuming, scrubbing the stove, changing the sheets, cleaning up after the animals, up and down stairs, twisting and turning. Every step and motion is agony and pulls at the frozen fibers of me and shoots pressure into my throbbing agonized head, but the alternative of staying still is not an alternative.

I try to outrun it by cleaning the house. It’s a dance. This cleaning.
Imagine me moving in space, enacting these motions, but the house has gone invisible.
It is dance as I spin and twist and move around. A dance of pain and yet the stillness is even more painful.
So the hope is it will pass enough that I can get down some ibuprofen or vicodin.

This way I feel, with everything from my ear to my shoulder to my leg and above all the head, screaming, reminds me that I died a long time ago. This is not life. So I am going to plan my funeral, because it already happened. Rest in Peace Stephanie Peirce. August 1969-November 2008.

Only did I really die in September 2007? That was when I first found myself sitting up alone in the middle of the night, in the dark on the edge of the bed, covered in a pain sweat, wondering what had happened. It took days for me to make it to the ER because my pain was so enormous (and my bp so high) that I was not thinking clearly at all. And people like my mate and my Mom and sister kept telling me to go to the ER but I couldn’t understand them. And then finally I did. The pain was in the right side of my back/shoulder. The docs and nurse could not find anything but bless them, they shot pain meds into my legs, and I got relief.

That was back when I was still experiencing the benefits of emergency medicine. I was in a Garden of ER Eden of Innocence, back when I believed that if I had intractable pain I would go there and someone would help me.

Would name it, would separate it out from me.

So was 2007 really my funeral? That was more like the date I was assaulted and left for dead. Seriously, it was like I woke up and was in a body that had been brutalized. I had been left for dead. Only the assailants were invisible.

But I limped along on pain meds and chiropractic and physical therapy and managed to handle many family matters involving my grandmother and father, and to finish graduate school and take a celebratory trip to Africa, and then came back and even got so far as getting started on hormones to hopefully help my cruel period, and even went to a job interview for a holiday season position at a retail store.
It seemed like I was going to go on with my life. But by the next week when the store manager called me back, I was in the hospital.

Today as I hobble quickly around scrubbing and dusting and smoothing, each movement a scream, I am taken back to how I was that November 2008. This is no different, that the soul would have to rise because the body was now the victim of some sort of unnatural disaster. I would have to lift myself up by the soul. And that is how I am now too. I mention this to my mate and ask if I should count the 2007 date or the 2008 date as my death. He is not sure but he listens, and then he confides, “I know exactly when I died.” “When was it?” I ask. “Nov 13th 2008” he says. Yes right in the middle of that month, a few days before my first ER visit, he was laid off for the first of what would become two consecutive November lay offs at two different companies.

That first November was when the bomb went off in our lives.

It is good my mate is solitary by nature, because he is all alone, as I am all alone. A wall the size of a mountain separates us.

I tell him I think we should do a ceremony. Some funeral. He says rebirth. I say yes but a funeral first. And he says maybe a cremation would be good. I agree. Ashes. So we will think on this.


(graveyard, Vermont)

a Fool in April

Not funny.

The thing in my head played a trick. When I woke up it had moved to the left side. This was not at all an amusing prank. I had hoped the pain of March would not follow me into a new month.

I had gone to bed at 4 am and woken up with severe head pain at 9:45, in this new strange left sided way, a place it never really is, though now it was also seeming to refer to the right.

I live in shock at how bad the pain is.

(For the past five days I had been considering the ER with its horrific bright lights and sharp needles and clattering noises and loud smells. The pain had become like a cloud in the right side of my head, and a bullet in the left. It seemed it was going to kill me.)

And what of the 8 am alarm? I vaguely recall hitting snooze about a hundred times, though it was far off, like a dream one cannot remember.

When I drove to the neurologist it was sleeting. The world was one long jarring pot hole. I left her office in as much pain as I went in, and was dejected.
The labs were normal. Next stop, steroids.
Is this all there is? Are there no answers?

I stopped and got a hot chocolate and had the rx filled.
Will I get worse on prednisone? I hope and pray not.
I had to take it in my twenties after shellfish-induced anaphylactic shock.
The first 24 hours were a comatose stupor but then I was so elated to be alive. Then I started the steroids and pretty soon everything became bleak and I began to wonder why they had saved me, just so I could wish to be dead. That was how the color and meaning bled from everything when I took those pills.

I can't really afford for the cure to be miserable. But I am hoping maybe it will help. I will try to start them tomorrow. Unfortunately I have that three week trial of antibiotics in recent memory and they only seemed to make me worse.

Woman who runs with wolves became woman who naps with cats.

I retired to my writing room. The room was very warm. I turned off all the lights. Tiger and Kit were nabbed, and we spent the late gray afternoon breathing quietly in the same small space. It was peaceful and though my head was in pain, I felt my mind drift.

My notes of the day had read, "Please Dr. Raab have a plan. Please help me get away from the pain."
and " Oh meaningless pain, I dont want you, but now you are me."
and "This is the worst April Fool's joke of all time."

In the evening my mate and I had dinner and then we went to the Oyster Point Hotel where there was an art show of Olympia's paintings. The goddesses were there and they greeted me with happiness. They have a play group and they invited me to join. (These are the women with whom I did some yoga and poured paint last Friday night in Long Branch. )Olympia wore a white dress like a cloud come down from the mountains, with great high heels and jewels. Where is the artist? I had asked the goddesses. Someone had said, "Downstairs in a hot white dress." Yes.

When Olympia is doing myofascial treatment on me she is working, and she is so nondescript as to be almost invisible. No make-up and her clothes are soft and monochromatic, and I have my eyes closed most of the time anyway. This was also wonderful to see her in her full glamour.

(My own glamour has been missing a long time. Too much hospice care, too much death, I think. I hope to learn how to adorn myself again in the near future. When my Mom came to stay with me when I was so ill in the Fall, I did get some fabulous eyeshadow glitter so that is a start.)

And now what about the body? I need to replace its pain with fabrics and flowers and ornaments and birds.

And we met Patrick, whom I had met just yesterday, in a strange situation in a bank, and had looked for him in a parking lot afterwards, to tell him I was sorry. But that is another story. He was wearing a necklace of red and black beads and badger claws. In a month he goes to Cameroon to help people have their sight restored.

Many beautiful and mysterious moments happened in the brief time we were all standing around. I was back in the dream of my real life, not trapped undeground.

Just looking at Olympia's paintings makes me feel better. The elements. And something happens, it is as if I am living my real life again since she has come into my world. As if I am back with my girlfriends in Seattle and the stars and oceans have aligned a certain way. Or maybe it is that the alignment allowed this.
There are perhaps better ways to speak of it.

The best that I can tell you is that my pain tonight is the least it has been in over a week. It is moving offshore, like a storm going out to sea.
I wonder if a large part of it is that at both a soul and cellular level I need that company of my kindreds to generate my life force. I believe this is true. Oxytocin, endorphins, opiates...love, laughter, hope.