The Soul and the Horse with the Wooden Wheels

For a long time it has been like this, I am both the wooden pull-toy horse with the string, and the child who pulls it.

You remember those old fashioned toys, yes?

The little wooden horse on a platform of wheels.
And you can only pull it so far before it tips or gets hung up.

There are many “me”-s, as there are many “you”-s.

One I goes on ahead, and tries to encourage the other I.

Then it goes back for it.

It gets out ahead of the small wooden horse and tries the carrot, and the sugar cube.

It gets behind and pushes.

Then it goes back to the front and takes the string and slowly pulls the horse forward as best it can.

A Picture is Worth a Thousand Words

Welcome Dr. Ponti

Have you ever wanted to give someone your firstborn?
I love Dr. Ponti.

And she is going to consult with the neurologist Dr. Raab!
It was her idea.

And she looked at that battery of tests I had run last Fall,
(The ones I fought so hard to get, for lupus and Lyme and auto immune issues,
the one the yelling doctor ruffled through a few weeks ago, sneering at me and saying, ‘I have tested you for everything, what do you want?’)

And what Dr. Ponti said today was, “We need to run better tests on you. We have much more informative tests.”

“There are?” I looked at her. She nodded, “Absolutely.”

Better tests? Have my prayers just been answered? It was like I was basking in the glow of actual modern medical care.

I love Dr. Ponti’s listening skills, her bright eyes, her confidence, her kindness, her shiny pointy black shoes, her competent and cheerful office staff and assistant, her thoroughness, her patience, her decisiveness, and the way she did an actual physical exam and looked in my ears and nose (and said you have blood in there on the right side, which I know), and listened to my heart and lungs and carotid arteries, and her space age chair and futuristically clean and simple exam room and her plan. She had a plan!

I DON’T HAVE TO BE MY OWN DOCTOR!

I have Dr. Ponti, I have Dr. Raab.

So next there is another MRI of my head, this time the side views of the joints, and not the brain scan, and then some fasting bloodwork.

She doesn’t want me to stay on the steroids very long if I don’t have too, though I told her they were my new best friend. I feel like a wounded animal who comes in from the far pasture when it is time for my prednisone.

By Day 3 I was looking forward to my prednisone.
When do I get my next dose? I asked the clock.
Will it keep the bull at bay from the china shop of my head?

Last night I still had such bad head pain and I who had dreaded taking the medication now wanted to double up on it. I truly was looking forward to today so that I could take another pill.

Pain still prevents my sleep so last night at 3 am I took a teaspoon of Benadryl and that did give me a three hour nap. I will likely do that again tonight.

It has been a fruitful day.

And the weeping cherry tree has burst into bloom.

The Toll

For several years now pain was interrupting everything I was doing.
It was the loud cacophony in the foreground. It blocked out people and conversations.
It twisted my face. It absconded with time. Its color was haze.
It prevented me from sitting down, from standing up, from lying down, from taking walks, from holding still.
I’d leave a task and wander off, because being in one place would turn me to stone.
It took my face, and left a broken grimace.

These nights I have grown gaunt and green
my face grown stranger with pain.
A stranger’s face.
Green and tan and red, the colors of my skin,
With blue rings around my eyes like oceans surfacing.

My face slick and taut,
pain has left its oil spill,
the fish of my cells,
floated belly up.

Or was it this-

Did hornets build a nest in my head?
I could feel the endless stinging,
Hear the ringing.

or

Is some devil frying my nerves like pork rind?

There is sometimes this crackle and flash, like fireworks going off.
Like pain is celebrating its Independence Day, as it rages unchecked like a wildfire.

I have never heard of anything like this.

Every pothole on the road between here and there slays me.

But still I must get there.

The Red Flag of Prednisone

I am trying to drive out this raging bull entirely.

It was like this~

I started the prednisone and the bull that had been standing with half its weight on my temporal lobe and half its weight on my hypothalamus and its hoof through my amygdala as it ran its horns up and down my trigeminal and occipital and cranial nerves as if they were viscera

Stepped off.

The prednisone waves its red flag.

I am still in the ring with the bull.

Or it is in the ring with me.

I see how I want to plant flowers. I hope the bull does not come back charging.

How do I get out of the ring?
How do I get the bull out of the ring?

Cluster

Within two days of Steroids I have some range of motion and am no longer curled up in a screaming little ball.

God bless steroids. Goddess bless steroids.

I know that if I had not started the steroids I would be in the hospital or dead.
My head was exploding.

But what disease is this that every single step I take hurts my head?

So really, I should be in the hospital or dead but because I am on the steroids I went out for a walk and made a plan to work in the garden. I purchased fresh herb plants~silver thyme, rosemary, sage, catnip. I feel like a commercial for a drug. Take this You Dead Person, and tomorrow you will find yourself walking a golden retriever under a blue sky and wanting to plant pansies.

Still no sleep for me.

But Dr. Raab and I have spoken by phone and she wants me to try to sustain this medication level for five days and then call her.

Last night, as I was up the entire night again, I read about cluster headaches and they are so precisely what my own head experiences. The suicide inducing pain, the crushed eyeball and the inability to hold still.

Demon, thy name may be Cluster.

So what is this, transformed migraine plus complex migraine plus vestibular migraine plus status migraine plus hemicrania continua plus cluster headache plus trigeminal neuralgia plus peripheral neuropathy?

Tomorrow I see Dr. Ponti, a woman who may become my new PCP.

If I say, “I think a demon has sucked the coating off all of my cranial nerves.”
What do you think she will say?

I may also go to a Lyme Disease specialist. And I have the name of a pain management specialist. So there are some things in my arsenal.

Today was another good session with Olympia. Session 6.

The only time I really rest is that hour when I am on her table.

I now call her table Mt Olympus.

Today when she worked on me I felt that the right side of my head was filled with cactus. That all those cactus belong in the desert, and not inside my head, prickling my brain. Somehow we were dealing with it.

Once a week I go to Mt Olympus to experience some rest on a cloud. The pain curls up and takes a nap. She hushes it.

The Red Socks

Along with all the jewelry in the house, and now some glittery eyeshadow, I notice I am wearing the red socks.

They once went down a river with me.

That was about twenty years ago on a day I nearly drowned.

The Twisp River was swift and full with Spring runoff, and cold as glaciers.

My mate of the time and I had camped, and then hiked, and then come down the mountain across the river from our campsite. Though I know rivers and their powers, I underestimated, or simply foolishly misjudged, and thought we could wade across.

And we did, making it to a rock sand bar in the center.

And then, just as were nearly at the bank on the opposite side, the bottom dropped down, in an optical illusion sort of way, and the rocks on the bottom were slick. My mate, taller and stronger than I, grabbed a tree branch and hauled himself onto shore, just in time to turn and see the river grab me.

The cold immediately sucked the breath out of my lungs and while I was then tumbled into shallower currents, I was no match for it, and I would find later that I had torn all my fingernails trying to hold onto rocks.

As the river took me, I saw I had only seconds until it grew deeper and swifter and wider, and yet I had no choices. I was caught in the tight cold web of the water.

I felt the life force shoot out of the bottom of my feet.
My head was barely above water and all I was was one cold white eyeball, the eye of a cow I had seen almost drowning in films of migratory river crossings in Africa.

My mate was a super athlete, a runner and hiker who bicycled many miles every day and worked out at the gym religiously. He ran the riverbank along side me, behind me, and then burst into the water and grabbed me up out of the river by my hair and the back of my neck.

This was super human. And he did it. Have I thanked you enough R, for saving me that day?

And is this what has happened in my life? Have I used up my Nine Lives?

The weird thing was, in my hand I still carried the red socks, dripping wet.
From the rock island we had thrown our shoes onto the shore. For whatever reason I had held on to these thick red slipper socks my grandmother had given me, and all that time I was trying to get out of that raging wall of melted glacier water, one of my hands was clamped down on these socks.

And I see I am wearing them now.