My Brother Proposes LSD as a Cure

I tell my brother I am in a certain kind of Hell. Day 11 of Head Pain.

He responds, "Day 12: stephanie does lsd to cure headaches, becomes one with the universe and then spends the rest of her life thinking she's an orange."

I think it is a fine idea.

I like oranges.

He also said, "Maybe you've got an excess of spinal fluid that is collecting around your skull and causing pressure that is giving you headaches. I remember the merch guy on that tour had that problem and that it gave him chronic migraines that nobody could figure out."

I have considered this sort of thing also. Especially when the pressure makes an egg of my head.

I tell him that now that they have done ct scans and mri's a lumbar puncture has been mentioned, an idea that i do not relish but that i have some serious voodoo in effect...

I tell him I will come for a visit and he says,

"Good Luck with all that and yes, I would love to see you before you become a redneck."


"It may be too late" I say.
"I had some buttermilk pie from the WeeMart in Liverpool Texas."

The Corn Shaman

So I had the nightmare and it reminds me that recently strangely many people including doctors have offered me an exorcism, or suggested one might be useful. I have said nothing of spiritual matters and don’t think that my illness has its origins in the spiritual realm. But there is something afflicting my body, and it seems that people do get the impression that it needs to be separated from me, removed from my head, as if this thing is an entity of its own.

I wonder what that says about it. That it is like a cancer or a parasite? That somehow I am host for this maddening pain that is not me or mine? Virus? Bacteria? Bad spirit? I am certainly willing to approach it from all angles. Whatever will work.

Will something please work?!?!?

I do know this. Six years ago I was in Pennsylvania and Rhode Island and I got very severe poison ivy. It did seem to blister my brain. It would not go away. It spread through my bloodstream and appeared in all sorts of places it only reached by traveling internally. It lasted weeks and weeks and weeks. I was on fire with it.

It changed my life plans. I was headed to grad school in California and I declined the acceptance. There were other factors also in why I chose another path, but I recall that at that time, I described the poison ivy odyssey as ‘hippocampus blistering’.
Like many things, it nearly killed me.

Around that same time, but not necessarily as a result of that, I had a Sleeping Waking Nightmare that involved a black cat creature. I think this experience came right before the poison ivy itself turned into a nightmare. At that point, I think I had just a tiny blister on my hand or ankle I had gotten from the dog, and it was going away, but then I would take the train to RI, and my friend’s cats would sit on my inner arms as I greeted and petted them. Soon I felt I was on fire, and I could not think how I could have been so burned. But then the blisters rose and I knew, and could not believe I had been so unthinking.

And then the blisters continued to rise and fill with fluid and spread and did not leave any skin untouched. It was like a plague.

On the train ride back to PA, I spent much of the time in the tiny bathroom, taking off my clothes and applying compresses of witch hazel. (I would return to PA. Then to WA. I would have had to cancel the trip to the admissions interview in CA but for a dear friend who went with me and drove me around etc.)

When I got back to PA, I was trying to rest and sleep. My mate and I were new to each other and he could not understand how sick I was. When I did sleep, I woke in the dark, in a sweat, covered in hot blisters, paralyzed and fighting for my life as a strange dark creature, a giant cat like thing, was on top of me, crushing my chest, biting me with all its force, and I could not scream for help, and I was paralyzed.

I knew I had to find the strength to scream, a voice told me that to scream would summon enough of my strength to break the animal’s hold on me, that a scream would help me get the poison out.

Finally I somehow mustered the strength to scream, it took every ounce of my strength and more, and in those moments I was focusing and rallying myself, I was trying to figure out what this thing was, where this jaguar had come from.

I realized it was not a real cat. It had been made by someone. It was as if inside it were wooden, and the outside was strange fake black fur. It was also strangely like a poisonous spider though it was a cat. And as I screamed, I looked over and saw there in the doorway, the keeper of this creature. In the doorway stood this tall figure, draped in robes, sort of made of triangle shapes. On its head was a very tall and pointed straw like mask.

I know this creature from some ancient tribe. It seems ancient, likely African. But I cannot say. It was clear to me that while the being appeared supernaturally tall they might also just have their shape and size enhanced and modified by this strange outfit. So while it seemed like a tall lanky man, I really had no idea of gender or size or age. I knew that the appearance was deceptive, was a costume.

(Is this some metaphor for my illness?)

From that time on I think I referred to it as the corn shaman, though that is not exactly who it is, and I often wondered, why would they come for me?

The creature is more like a bad witch or warlock, not a shaman really, though I have never really figured out who or what it is. It has come to attack me several times, though until this nightmare today, I have not seen it in a couple of years. (And I did not see it today, but this cat/black hole/bomb nightmare is like its handiwork. It has its fingerprints.)

As soon as I screamed, the creature flew off me, the corn shaman turned and went down the hall, my mate woke up in concern as I lay there practically unable to move and drenched in sweat and what felt like poison.

A week or two later when I went through security at the Seattle airport on the way to CA, the woman at security asked me if I had been mauled by a cat. I had covered much of my skin but indeed as I looked down at my arms, they looked like giant cats had scratched me. “That would have to be a pretty big cat” I said, honestly thinking that the woman was silly and that if I had been scratched like that I probably would not have survived, and explained to her it was just really bad poison ivy, but then later I was like, “Oh, she was right. I was attacked by a cat.”

The Terrible Dream April 30th 2011

I have always been afflicted by what seems like an unusually high number of nightmares, and unfortunately my health problems often prevent good sleep and so there is some cycle of fatigue and nightmares that is hard for me to break. I do sometimes have rich and beautiful and meaningful dreams but that was not the case today.

It is Day 11 of head pain. Since I am a stubborn idiot I have not restarted steroids, because something in me keeps believing this storm is going to back off. And after the Olympia session yesterday I did feel somewhat better, and last night I did sleep and I got up by 9 ish and what I notice is that as soon as the 10 day migraine passes, what I am left with is crazy right sided prickling and pressure. Trigeminal neuralgia? The global head pain began in 2007 but this right sided monster only arrived in Fall 2010.

How are they related? In what ways are they the same thing? Did the one cause the other?

This is the thing that makes my ear go all crazy and squishes my eye and it makes sounds and creaks and sparks and tingles and pricks and makes me think a cactus has grown in there.

When I was driving along in the Bronx on Tuesday, contemplating going off the Geo Washington Bridge, I tried to come up with words for it. For days and days and days it had been like someone had been repeatedly scraping the inside of my skull with a dull spoon, as if they were emptying a gourd to make a bowl. This went on for days. A horrible dull pulse of scraping and hollowing, something exerting pressure on the inside of my skull in waves.

Then, as it shifts from cloud to hatchet, it took on the feeling of two tigers fighting each other inside my head. Or two tigers attacking me inside my head.

Then it is like someone unrolling huge coils of barbed wire, lashing me with this barbed razor wire.

But back to today, we went to brunch at the In-Between and it was lovely. I was able to enjoy a meal and we did some errands, but I got progressively more tired. The crackling head pain really Makes me Tired. So much so that by 2:30 when we were at the library I opted to just lie in the car, and when we got in at 3 I went straight in and got in bed. Within in a few minutes I was napping.

My mate came in to tell me he was going to the gym. I fell right back asleep for about a half hour, woke up and then fell asleep for about twenty minutes when I was awakened by a horrific nightmare, and one that has precedent, which is why it so catches my attention.

In the dream all was well but I went outside to catch the black cat and as I carried her inside, she grew stronger and stronger in my arms and more diabolical, (and it wasn’t our sweet black and white kitten Kaboodle who lurks in the garden) and by the time I had gotten her upstairs it was like she had turned into a strange muscular bomb. I had my eyes closed to protect them and I expected her to spring from me, perhaps leaving a nasty scratch.

Instead, this thing turned into a black x shaped thing, it was attached to me and exerted a force so great I was being crushed to death and ripped apart. I was paralyzed but let out a blood curdling scream.

And I think I did let out a blood curdling scream in real life, and I wish my mate had been here so he could tell me. I do think I screamed as loud as I could in both the dream and real life.

The thing let me go, but I was nearly bombed apart at a cellular level by this strange black spider thing that had looked like a cat but then exerted a black hole sort of force upon my body and would not let me go.

For the past few years, I often cry out in my sleep. Sometimes in pain, sometimes in explanation. Often it is that I enter a certain stage of sleep and it almost seems all my inner brain surgeons are hard at work trying to figure out what is wrong with me so at certain stages I must cry out to make sure we know not to damage by verbal and speech centers.

This was yet another nightmare which I might just let slip from consciousness as I go on with my life. But this one has a precursor. It is like the malevolent force that the creature I call the corn shaman first sent six years ago exactly to try to kill me.

Olympia Session 8

As I entered into Day 10 of head pain, I was so relieved to have a session scheduled with Olympia.

The miracle is-I know Olympia will make me feel better.

When I saw her coming down the hall I said, "Dear Pain Whisperer. I am so glad you are here. I need your services."

And she was ready for me.

She smiles at me, gives me a hug, and then gets to work.

She helps me so much it is like a miracle.

It is hard to explain. The treatment is both intensely physical and also deeply spiritual. She puts me in touch with the me who is only flesh and bone, skeleton attached to bones, tendons and sinews and flesh.

And through the work I also feel my soul.

And because some of the treatment is so darn painful, I have to believe one element of the therapy's success is that it has to really inspire the body to produce its own painkillers.

There are aspects of the treatment that are also just deeply calming.

Today I felt like she was realigning my stars.

At one point today I felt like I was wearing a ceremonial headdress, and at one point one of those bone ornaments I have seen indigenous people, especially Native Americans, wear across their chests, those bone breastplates. What is that sacred ornament called?

I did not want to leave the table after my session. I was so at peace, and so pleasantly separate from my pain, I just wanted to levitate and float away, not stand up and walk, subjecting my head and feet to gravity.

But then in my car, I found myself humming as I drove along.

A better day.

Tattie's Inaugural Off Season Easter Egg Hunt

I had had other plans for Easter. I had had other plans for April. I had had other plans for my life.

For Easter I was supposed to be in Bellingham WA celebrating with my family and partaking in Easter Egg Hunts.

But I was so ill all of April that all plans were sent scattering.
Instead, I nearly died of pain, started steroids, got new doctors, flew to Houston with my mate to check out his potential new job site, and then made it to RI where I spent Easter with E.

Her plans went awry also as the three darling nieces did not appear for the egg hunt and general festivities.
But we dyed eggs anyway and played Boggle and made and ate walnut gingerbread and had tea.
We participated in a funerary ceremony which entailed putting her beloved mother's ashes (she died six years ago) in a phenomenal 86 pound urn with lotuses and poems that her father had cast, there at the front door, surrounded by her mother's garden of tulips. The sky held puffy blue clouds and then just as we did the ceremony a quick Spring shower happened. There was some brief sweet singing of 'Until we meet again, dont know where, dont know when...'

And now I am back in NJ and I am trying to get well enough to fly west next week, to get to Bellingham to see my family and friends and my village and my bay and mountains and islands and evergreens and apple trees, and to kick off Tattie's Inaugural Off Season Easter Egg Hunt for my darling niece Lucy and my darling nephew Kash.

We do what we can. Whenever we can.

Waffle Iron of Love

I have the best boyfriend in the world. When I lie back down with him in the morning, just to cuddle for a few minutes before he gets up at 6 am to leave for work by 7, he wakes up sweet and groggy and asks where I have been.

I explain my head forced me out of bed again but that I missed him and did not leave by choice.

"I should make us some waffles right now," I say. "Wouldn't buttermilk waffles and maple syrup and butter be delicious?"

"Yes," he agrees.

But I have been waiting for years to get a waffle iron. As if I would someday live somewhere where I would be settled enough to get a waffle iron. Like then I wouldn't have to move it, as if a waffle iron were some large piece of furniture.

As if my life were going to happen someday in the future.

What have you put off?

What have you been waiting for?

I have not had a waffle iron since my family had the fantastic old hunky green one which was nearly an antique and made thick crisp golden waffles.

In my late twenties a girlfriend and I threw a waffle party at my apartment, complete with fresh ginger syrup, but even then we borrowed waffle makers.

My mate says, as if reading my mind, "I am going to go get you a waffle iron.
What are we waiting for?"

Lorna Doone Cookies of Doom

For months and years now my pain has held me hostage. It used to tell me to live day by day. Now it tells me to live hour by hour. Minute by minute. Threatening nasty thing, this Pain.

In the grocery store one day I saw some Lorna Doone cookies. I like something about the package and think they are nostalgic and have been around my whole lifetime, like some cookies we used to have after church, a long time ago.

Cookies we outgrew.

But now I think, what am I waiting for? I must get some Lorna Doone and try them.
Once I am dead, once there is no tomorrow, I will not ever regret not eating all the cookies.

Oh, here it is, what I wrote in my notebook March 6,2011 when my head was killing me.
"Lorna Doone, Cookie of Doom." I thought, "Should I? Shouldn't I? and then "What am I waiting for?" After I am dead I can't eat any more shortbread or wear any more glitter. Or have any more sex or breathe in any more fresh air. Well, I don't know. Maybe I can. But I had better do everything now. NOW! What am I waiting for? I intend to get very busy. Put nothing off.

Put nothing off.

Nothing like Severe Pain to tell you that impulse control is overrated!

Calling Dr. Raab

I call to say I am on Day 9 of the Severe Head Pain, Day 4 of Imitrex, and have just seen Dr. Ponti who told me to call. Should I take another Imitrex? Should I try the Maxalt?

Her office promptly and kindly calls me back.
Dr. Raab has said to start steroids again. A low dose. 10 mg at a time.

Dr. Ponti Visit #2

She is marvelous.

She listens to my litany, and then she asks, sincerely, "Anything else?"

Before the visit is over she examines me.

She sits down next to me and explains my lab results. There is nothing shocking or unusual really.

I am anemic. She wants me to get on prescription strength iron of 325 mg 2 x a day.
If that doesn't work then she can give me it in iv infusions.

To help my cholesterol and blood sugar she says decrease carbs, increase fiber, and get more exercise. I explain I now get no exercise, and I long for walks and the gym but in 2011 my head will tolerate Nothing. She suggests swimming. I had been thinking that too, that if we went to Texas I would get a pool to get into daily.

She said it can be common to get nosebleeds with flonase and she can still see some blood in my nose, this time on the left, but its better. We agree I should not go back to the flonase. She says to use a saline spray and continue with benadryl.

My bp is 130 over 90 today.

She says continue the Vitamin D at 5000 i.u.s a day.

I talk about wanting to try pure oxygen for my crippling head pain.

She wants me to call the neurologist and talk to her about my head.

In the meantime, she gives me a sample of Maxalt to try.

I wish she were not at all hesitant to try something radically new for me, but I appreciate her caution because she acknowledges "You know, you still don't have a diagnosis yet." Which is true. Dr. Ponti's bedside manner is so opposite the yelling doctor who repeatedly tried to tell me my pain was normal and rushed me out her door.

Dr. Ponti looks at the blistering sizzling spot on my shoulder, and she says, "That looks like skin cancer." I say I know. That it is identical to what reared up in the matter of a couple of weeks in Spring 2009 when I was also very sick and two doctors and I thought it looked exactly like skin cancer. It was biopsied and the results were inconclusive.

We agree a biopsy is in order.

She asks if I mind needles. I say No.
She gives me lidocaine injection first. I ask if she can please give it to me right into the right side of head.
She says, "If I do, then you will just ask me to do it again."
I said, "Yes."
She said "Sorry, I cannot put a needle into your brain."
She then cuts the flesh from my shoulder, and she cauterizes it with a high tech instrument. I barely feel a thing. But the smell of my own burning flesh is strong.
She says, "I think it will be actinic keratosis and it will heal well and you will not have any problems, don't worry." And she tells me how to do the wound care for the next few days.

I am not worried. I have been through all this voodoo before.
I just want relief from my head pain.

But at least I leave her office feeling like she cares, she has given me a pill, she has instructed me to contact the neurologist, she has given me a copy of my lab results, and she will see me again Monday for the porphyria blood draw.

I feel much less alone.

I tell her I am grateful she became a doctor.

Outside the rain begins to fall.

The skies have been strange all day.

Hieronymous Bosch Diorama

How did my life become a Hieronymous Bosch diorama?
How did I become surrounded by horrors on all sides?

a terrarium of hell

I finally slept a little this morning but I had grim nightmares in which my beloved baby brother was in danger, and then a woman who was in a catastrophic storm had escaped the floods and winds and reached her rooftop, but then a shaking earthquake came and swept her into the raging debris filled waters. I tried to stay in the dream long enough for a rescue attempt to be successful.

When I awake, the news is filled withe tornados.
The south east has been devastated and hundreds of people are dead.
A tornado a mile wide.

I go to see Dr. Ponti.

I still adore her.

But that does not change the fact that I am on Day 9 of severe head pain, that my lab results show anemia and a few anomalies but nothing hugely revealing, that while there I will be subjected to the smell of my own burning flesh, and that I will leave with a paper sheet on instructions for wound care.

Imitrex

Today is day 9 of the head pain, or is day 365 x 3? As a prisoner here, I have lost track of reality.

This is my 4th Imitrex in 5 days. Today is Thursday.

Easter Sunday was my first dose.

It is neither a miracle cure nor a drug that lands me in the ER.

It was prescribed a year ago, and countless times during the year I held it in my hand and almost took it, but was scared off because I kept having severe high blood pressure spikes, and elevated bp is a contraindication.
I also had many other health problems I was trying to attend to so the head did not always get priority as sometimes the right shoulder or upper right abdomen or heart or feet or knee were screaming.

Also, my migraines were what are called Complex, with scary stroke-like symptoms which leave me without access to words, delayed to speak, and with Intense Aura, spots and holes in everything.

So half the docs said Dont take the Imitrex and half said Do, and so how do you know what to do?

Well on Easter it was Finally Try It, as I was on Day 4 of severe migraine and ibuprofen and fioricet had given me less than an hour of relief. So it was either try it, re start steroids, or head for hospital.

I was with E at her home in RI. Thank you my Friend for giving me an opportunity to finally try my medication.

It helped.

Not immensely the first time. The first time it made me queasy for about an hour, but then at the two hour mark I felt a sweet tiredness and drifted for a few moments, closer to sleep than hell, and then I went down and rejoined people and ate some dinner.

Then I took Benadryl and went to bed.
The next day the pain was severe. I took the Imitrex again. In about two hours I began to feel a slight relief. I could smile and I became talkative.
The next day the pain was back, and was severe. I considered the ER.
But two hours after taking another Imitrex, I could feel the cloud of pain back off, and I was able to eat dinner, and take a short walk, and go to bed and sleep 6-7 hours.
So yesterday my pain was finally lower and my period was ending and I thought I might be granted a stay of daily execution, but by last night the pain was roaring.
Still, I thought I might make it through. But the pain never goes away by itself.

I tried the valerian tincture for the second time, took a bath, and went to bed. Slept 5 hours before the pain finally awakened me, drenched in sweat, queasy, agonized.

Now it is 7 am. I am having goldfish crackers and coke. Waiting for the Imitrex to disseminate through me.

Day 9 of Severe Head Pain

Today is Day 9. There have been too many Day Nines in my life, starting in 2008. The pain like a long dark tunnel, so like a prisoner who marks the walls in an effort to keep some focus and hope, I begin counting the days.

Here is a difference between Day 7 and Day 9.

On Day 7 I was considering jumping off the George Washington Bridge.
On Day 9, when the pain woke me at 5 am, drenched in sweat and sickly nauseous, I staggered around the house thinking, "Who can I get to kill me? Can I hire someone?"

Now it is nearly 6 am. The hot pack is on my shoulders. I have gotten down a glass of coke which has quelled the nausea enough that I can consider the array of pills before me.

It is a toss us between the Imitrex which I took 3 of the last 4 days, or Vicodin, which I have not had since last month.

In truth, it looks to me like I may need to go back on the steroids, which I have been off of for two weeks. But I have gathered my papers and my hopes and lists and later today I see Dr. Ponti for lab results.

I also intend to ask her about pure oxygen, hormone supplements, sodium valproate, liquid narcotics, a new allergy medication.

I quit the Flonase, which I had been on for a year, two weeks ago and so far my nose has nearly stopped bleeding. It may be coincidence but I doubt it. More on that later.

Oh, and the doctor will likely do a skin biopsy. In the past three weeks a new and nefarious entity has arisen, a round hot blister of skin on my right shoulder. It looks exactly like the skin cancer type lesion that rose up Spring 2009. Two doctors thought its appearance was that of a cancer but the biopsy was inconclusive. Here we go again. I can't really muster a Wheeee! right now. Let's see what the doctor has to say.

Outside the birds are singing and the sky is turning black to blue.

The Beautiful Blood Draw

10 am fasting blood draw.

Dr. Ponti did it herself.

She was so wonderful as she took an enormous amount of my blood and filled glass tubes with it. And then with tremendous kindness in her voice, she asked, “Hey, how is your head?”

She is dressed like a spy/doctor on a tv show, and
She speaks to me like she is my caring Russian big sister.

When I came outside, the sky was blue
And birds were singing.

I drove myself to Freehold where Sally and I played cards and planted buttercups.

The Offer

I slept eight hours! This is a Blessed Miracle!

I can feel my head is trying to rebuild Rome.

All night the skies stormed, and today outside is a heavy mist and fog.
My kind of weather.

Pink cherry blossoms and a silver pond.

Today my mate might get an offer from the Missouri/Texas company.

If so, likely we will have to say farewell to the violets, and to the beach,
To the oak trees, and the Ping.

We will have to herd the cats.

Earlier he has been saying a very Harry Potter sort of saying~
“Novus Ordo Seculorum”
with the accepted translation: 'A New Order of the Ages'
It’s written on the dollar bill. (Novus is the company offering him a job.)

When he returned from St. Louis last week, he had called from the airport and asked what he could bring me.

A postcard, I said.

And he did, and it turned out it was of Hardscrabble Farm.
This was Ulysses S. Grant’s cabin and farm.
With the help of friends, in 1855, the cabin was built in three days.
Grant had an orchard and grew fruit and wheat and potatoes.

So we may be making a trip to Chocolate Bayou.

Say it like that, a trip to chocolate bayou.

Triptochocolatebayou.

It sounds musical.

Dr. Raab Visit 4

I love my neurologist.

I love that she took the time to answer my questions.
I had printed a poster of my head so I could ask her about The Lost Cameo and she very kindly said the CT scan looked normal and that those were mastoid cells, that that area was air, was space.

And she went on to turn the page around, and to say “But it does look a little like Jesus,”

Which made me laugh. And she continued, “You could get a lot of money for that!”

And we laughed further. And the conversation continued, that she could see an Afro on the cameo, and if she turned it further, “Wait, is that a penis? But I think it has a problem.”

And we laughed, and I said “It’s a Rorschach scan of my head” and that it would figure that my problem was that there was Jesus, or Jesus with an afro, or a deformed penis in my head. Oh, is that all it is? No problem!

And please understand, she wasn’t making light of me and my troubles. (Or of Jesus. Afros, or penises.) She just has this wonderful way about her. I completely enjoy her.

So she doesn’t think the blood in my nose is from the back of my head because she says there should be many more walls between those areas, and the CT scan and MRI didn’t show such problems, but she does say see another ENT, (or the same one again) because my concerns about infection could be valid.

And I could possibly try an Imitrex when the migraine roars up.

But maybe in the meantime we need a preventive as she very compassionately said, “We don’t want to lose two more weeks”, and so she advises nortryptaline at night, in consensus with Dr. Chenitz, for chronic pain, migraines, and sleep issues.

And she says it’s ok I want the Porphyria testing and to check with Dr. Ponti, and if their office can’t do it we can figure out where I can get it done.

When I told her how important it was to me to get the genetic testing, she was very kind and said, “This is the future.”

Nuns at Trader Joes

I’ve stopped off on the way to the neurologist to get her and her office staff some flowers to say, Thank you for saving my life.

On the sidewalk outside I smell a strange perfume of garbage and food and plants and exhaust. It reminds me of somewhere else, like Mexico, and I think of how the perfumes of a place are much dependent on climate and how much garbage service a country has, how a culture deals with its waste.

At the doorway I meet two beautiful nuns, one round, one tall, in the doorway. Dressed in their traditional and old fashioned black and white robes.

I choose a small woven green basket of purple campanula, dense with bell shaped blooms. I choose it over other things precisely because it is compact and without fragrance and will not harm the neurologically sensitive.

Then I think, cookies, and I go and find some short bread with apricot and raspberry jam.

I go through the check-out line of a nice man named Mike B and he comments on the flowers and lifts them to his face and tries to smell them. I say I don’t think they are fragrant. He agrees. “I think you are right. But my wife lost her sense of smell and she always asks me to describe how everything smells.”

I inquire further. It turns out a year ago she fell and hit the back of her head and was in the ICU for a long time. She recovered but her sense of smell and taste never came back.
He says there is research going at the university in Pennsylvania but she is not eligible because they don’t handle folks who have lost senses due to physical trauma. I tell him my own head is strange and I am on my way to the neurologist, and don’t give up hope, we may all get answers yet, and our brains may heal.

I don’t see the nuns again but I love the idea that they are out there,
And they are shopping at Trader Joe’s.

I wonder what my favorite nun Sister Wendy Beckett is doing these days?

My right side head is still misbehaving.
How did pain and I get to be on such a first name basis?

But look how well I am doing. I can think, walk, drive, eat, talk, listen.
And none of this is taken for granted.

The Blue Cat

I love my blue cat with a Supernatural Love.

My blue wizard, my magic cat.

I caught him as a wild feral on the day Obama was elected. A day of Hope, a day of Yes We Can. November 2008.

He was so hungry. And I made a trap. And when I caught him he was all double triple back flip and Lunging and Hissing.

Blue was a Verb.

It took time for us to tame each other.

I would become so sick in the weeks to come I would not know if I would be around to see Obama’s Inauguration, but I was.

I became so sick I would quite often hallucinate cats.

And I wondered if it was possible that Blue was bad luck in some sense that I had either caught a disease from him, or that he belonged to a magician who was not happy I had his familiar, or that the cats had come exactly because I was ill, the way they sit vigilant in nursing homes and temples and we were living in some world-between-worlds.

He was right there with me through it all.
He has kept me company this whole journey.

At my worst, when pinned down in various medical settings with fluorescent lights and needles and iv’s and ultrasounds and scans and tests and tubes and fans and tunnels, I would imagine him with me.

He was always with me.

And I just love Little Boy Blue.

The Fink.

Trotsky.

The Blue Wizard.

We have a hundred names for him.

He is aloof and spirited and likes to stay out nights. He loves his brother the dog. When the three little kittens were tiny he would watch over them like an uncle, and he is a good big brother to them. Kit in particular is smitten with him.

He will not be easy to relocate. He belongs to the earth here.
It would be easier to move Tiger Ball, who is called that because when I pick him up he curls like a furry little pangolin (while his two siblings cannot be picked up at all but fight most attempts at domestication.)

But Blue is ours, he is our family. I believe he will adapt. He has his destiny too.

Olympia Session #7

She is the thing that is able to calm down my pain, her work is what calms it down.

And she is off to to her own homeland of California for her nephew’s wedding and some treatment of her own, her own time on the table.

So I won’t be seeing her again until she gets back and I am right there as she begins again, on April 25th.

I will be pining for my time on that table.

In her work, it as if she chases the wolverine of my pain, until she catches it, and pins it, and calms it. She begins with my posture and my hips and then I lie on my back on the table. She works on the psoas muscle on my right side, and sometimes on the chest and neck. Always on the head, often on the left foot.

The pain likes to snake up from my center front right abdomen and then push into my back and up into my head.

Today she had it all calmed down.

It was time for me to go.

But then she an intuition she should work on my upper left leg, and when she did so indeed I felt the black spot in the right side of my head, and the poor thing was like a black spot in a rotten apple.

It was also like a metal silver ball of mercury that had metal talons which snaked down my body and needed to be sent back into the ball if they were not to cause me harm.

When she put pressure on my upper left leg, Above where the left knee hurts and the leg lumps are below, this amazing sinewy snake of sensation unwound through my left leg like tickling and coiling and all sorts of strange feelings, and I immediately had an image that I was rock climbing in the Garden of the Gods in Colorado.

Who knows what it means? But I love Garden of the Gods.

I began with Olympia less than a month ago and in that first session,
she reconnected me with my purpose to help people.
To get well so I can begin again.

She is here to help the chronic pain sufferers.
It is not as easy task, and she is good with the job.

When I get well enough I would like to follow in some of her footsteps.


I have asked her to drive by the house and see if it feels right to her.
It is important that she sees it first when the cherry trees are still blooming.

I have told her how I love the house, how it is like my friend.

I can tell you more about this later. Suffice it to say, since I first met her and began working with her, many miraculous things have occurred. Her work restores me. I feel I went to the temple and I am being tended to.

Since then, I begin to prepare the house for a goddess, and our house here reminds me again of Shenmen, a magical healing center where I worked in Seattle, under the auspices of Jessica Randall, acupuncturist/herbalist/medical intuitive/artist.

Olympia is having Spring of her own. Her new friend Patrick is attentive.
I ask her of a possible anniversary date with him and she says March 24th, when they met.

I know she can see potential, the potential, in all things.

Outside the giant bees are bashing into the cherry blossoms.



(4-11-11)

You Will Get Better

Monday noon and the right sided head pain roars up. It tries to calm down but it doesn’t know how. Even the pain is exhausted by itself.

There has also been this massive shift in the weather, from cold to suddenly its 91 degrees and humid sweltering sticky and the blossoms are wilting off the trees.

My mate has a very bad headache and calls from work, trying to figure out what else he can take, and decides its time for his own migraine drugs.

I know some of the things I need. And so I focus on them.
They are sleep, rest, calm.
Eat chicken and turkey and buttermilk biscuits and drink milk.
Take the vitamin D and magnesium and find out if calcium and fish oil would be good to resume.
Reduce and avoid caffeine, except for iced tea which is its own Miracle.
For dinner I will make a large Greek salad.

The pain wants to electrocute my flesh from the head down to the upper right abdomen.

But I look at myself in the mirror, and calmly calmly I tell her,

“You will get better.”

The Nincompoop

My sister can really be a nincompoop. (She doesn’t read this blog and don’t tell her I said so! Hahahaha. She already knows what I think.)

My baby sister is an amazing human being and very active and busy parenting my darling niece and nephew, going to school, working, and dancing. I adore her. Even when she is a brat. She is also the sweetest person ever of course and lets me stay with her and picks me up at the airport etc. She is a fantastic sister.

And she is in a wonderfully happy phase. (May it last her whole life long.)

But I have seen her suffer, and I have taken her to the hospital, and I have been on the receiving end of her cranky periods. Hell hath no fury…like a grumpy Pearse.

And she is a sleepwalker and since childhood I have followed her to open doors in the middle of the night and kept her from trying to go out a second story window in an unfamiliar hotel room just a few years ago.

So in the last few weeks I emailed her and asked if she had ever been tested for porphyria. I assumed she had not but wanted to be diligent and ask, and also thought maybe it would ring a bell if any doctor along the way had ever even mentioned it in passing.

She never responded of course, which I know means~she is busy, no she has not been tested, never considered it, and she doesn’t want to talk about health things because she is sick and tired of being sick and tired and especially sick and tired of people in our family being sick and tired. And she is Moving Forward.

And its true, healthy people don’t go around talking about their health.
Unhealthy people go around talking about it.

But tonight we spoke on the phone and so I asked, “Sister, have you ever been tested for porphyria? “
And she literally yawned and said “No, and I looked at your email but it doesn’t sound like anything I ever had.”

“Well”, I said, nice and calm after my seven days of steroids, “two of the primary symptoms can be severe head pain and severe abdominal pain, and if I remember correctly you spent your entire twenties in extreme abdominal pain.”

She finished yawning and said “Yes, that is true, but that is most likely because I was taking ibuprofen about every eight hours since I was 14 years old.”

“And why were you taking the ibuprofen?”

“For my migraines,” she answered.

Whit’s End

And so we prepare-
to leave Whit’s End.


The undertow finally lets us go.

The Gracken released its hold.

Porphyria’s Twin

Seven days on prednisone (the stuff I love) and yet I have decided to wean myself entirely. I want to see where I am.

And I am currently convinced that if what I have is not porphryria, it is Porphyria’s Twin.

I think back about my entire life and how many long nights I have been awake alone with strange thoughts, spending my time covering my skin in elaborate plasters for the latest eruptions that whatever mysterious forces or exposures have caused.

A very Gothic life in many ways. Sleepless and with groans and shadows. And blisters and sorrow.

I can see dark symptoms in both my grandmothers, in my father and mother, and in the siblings with whom I share blood relation.

This does not mean I think both sides have this rare disease, but that indeed I do think both sides may have the sorts of genetics that manifest with neurological symptoms, and perhaps someday tests and medicine will learn to diagnose and help these complaints, these agonies.

And if it all turns out to not be porphyria, if finally there is a better test and doctors find that indeed I have the lupus that they have been testing me for for 27 years, then I shall blame lupus for making me think I have porphyria!

Most Curious Pricking

All day today, April 9th, and maybe last night also, there’s the most curious pricking going on in the right side of my head.

Pricking, prickling.

Prickling pricking.

Small porcupines.

I have to say strangely it is almost pleasurable, some of which must just be the relief and contrast from the horrific pain, crackling, sloshing, and pressure I have had other times.
And this is not the electricity, knives, and lightning bolts.

If I had to describe it, I would say it is like many woolly bear caterpillars typing on tiny typewriters.

Or is it a miniature English hedgehog convention? And are they sleep walking?

Gone are the days of Osama Bin Laden eating pop-rocks in the cave of my head, and gone is the Morton Salt Girl stomping and sloshing about. The fizzing and fireworks have backed off a bit, as has the stabby icicle, ice pick. Gone is the long bladed knife lightning.

And now it’s this funny prickling, almost tickling.

You know that pre-sneeze- tickle one gets-it’s almost like that, but in slow motion, lasting a long time.

Or it’s like the prickly swaying of tiny cactus needles as a desert breeze blows over them.

Is my head about to burst forth in cactus blooms?

(Hmm, that could be bad. And then would a cactus wren come and nest there? Would I hear the bird song? That could be nice.)

I reduced the prednisone yesterday from 10 and 10 mg to 10 and 5 mg and today I have had just 5 mgs as I wean self.

I slept the second night in a row without drugging myself with benadryl, though it was not a good sleep, so I have gone and gotten some valerian root tincture,

which I shall begin soon, drops in water.

Dis Ease of the Nerves

What Dr. Chenitz did was connect some dots.

I still don’t know what the picture is.
It’s like a cryptogram.
But it’s a step in deciphering the code, the hieroglyphics.

I still don’t know what it means that his pushing a spot on my head shot immense pain into the three places that had landed me in the ER in 2007, 2008, and 2010 but somehow suddenly I saw that what I was dealing with was all the same thing, has a similar root.

Before this, some time in 2010, I began to realize that I was not dealing with just crippling never ending cycles of migrainous head pain, but that “migraine” itself is a complex neurological condition.

But even with these dawnings, it was hard for me to understand that a disease of the nervous system, or a neurological disease, meant The Nerves.

Part of the problem is trying to use the brain to understand the brain, and trying to use our fantastic nervous system to think about the nervous system, and part of the trouble is that my poor brain has been under such duress and so inflamed for so long, it was having trouble with the basics.

Plus, I am not a doctor.

And even doctors are not supposed to be their own doctors.

So this is why I say Hallelujah I now have Dr. Raab and Dr. Ponti and Dr. Chenitz and magical Olympia with her healing ways.

But here is what I am wondering, ‘What is going on?’ Hahahahahaha.

Even now sometimes I feel the stabbing in the upper right abdomen and I am afflicted with an endless burping that has nothing to do with eating or drinking or digestion. It started around 2008 when the upper right ab went into agonies and it has never gone away.
Now it makes me think that it is that nerve being stimulated.
And that the same goes for the weird blacking out I was having when eating over the past six years, some wackiness with the vagus nerve perhaps.

Or all the cranial nerves being played and frayed.

The Devil went down to Georgia.

So the fact that I now finally see that what I have is a major Dis Ease of the Nerves, explains why for so many years I have felt like I was under the Voodoo.

And doesn’t it also sort of explain why my entire life when I would get poison ivy or when I got chicken pox or a sunburn or anything, that it would run rampant and blister all my skin and even my brain? Something with the nervous wiring.

So now I want to know what that crackling and pressure in the right side head is, that then my nose bleeds, and if it hadn’t been going on for six darn months I would be sure it was going to kill me, but look, I am still here. It is alarming and can be excruciating, but I am still here.

And I think ok well good, fine, at least the blood finds a way to get out. Maybe little surgeons are in there with their tool kits and now I don’t have to resorb all the waste. The body needs ways to purge itself.

So is that nerves? Or veins? Or arteries? Or membranes? Or organs? Or organelles? Or cells? Or mitochondrion? Or neurons? Or all of the above?

So I am focused on how to heal that. How to get sleep. How to rebuild the nervous system. (I feel it doing it itself and I want to help.)

I want to stay focused on how to heal possible nerve damage in right side head.
Reduce inflammation, get sleep, avoid light triggers, be calm. Rest.
Maybe fish oil, gla, calcium. Nutrition.

Thanks to the prednisone I am alive and I have weathered another Epic Ordeal.
So many this lifetime.

And so if I need the prednisone again, or to stay on it for a lot longer while we figure this out, I will give thanks I have that as a lifeline.

One Enchanted Evening

My mate calls from the St. Louis airport.
He has just been offered a job!* I nearly levitate with happiness.

Then UPS arrives with a new internet router.

I could not be more deeply calm and happy.

I make chicken and dumplings.

Outside a powerful rain falls in the darkness, a nice purple dark rain, heavy but straight down and drenching but not damaging to the plants.

I open the kitchen door a little and Beezle the wild kitten saunters in.

This is a dear moment. This is like having a baby bobcat come in from the wild.
I put a little milk on the porch for him. He laps it up, and then runs back inside, and curls round and round my legs, looking up at me, occasionally meowing.

Beezle the winter kitten and I have a history. This is a very feral animal, born in late Autumn, who has given me much trouble and whom I named after Beezlebub.

But this night it is a scared young thing and it winds round and round my legs.
It leaps up to knee height and tries to high-five me with its polydactyl lobster paw hands.

But one must be careful with this little bobcat. It does not know human manners.
I try to pet it a bit and it doesn’t know how to respond so it comes at me with its swiping paws. Its eyes are very like wild fire. It wants to love and be loved and it wants to be adopted and come in from the cold and wet. But it has its winter skills, surviving on its own through blizzards and hardships.

I feed it little bits of chicken.

I cook dinner while it steps on my feet.

When the dog comes up, he wags his tail at the kitten in a friendly fashion, and the Beezle runs out into the night through the open door.

All this time I have believed Beezle was a boy, but with this closer look, now it is not so clear.

*

Later in my enchanted evening,
I find myself

Sitting in a rocking chair,
Looking out at a rainy night.

I finally feel at home.
Just in time for us to be leaving.

Or is it partly because we may be leaving?

(4-8-11)

(* a verbal offer, from recruiter not company so he will have to wait until next week to hear more officially, and completely believe it, but i can still jump for joy now)

Malpractice

I continue to think back to the appointments I had in the past 6-12 months with the yelling doctor.) Since seeing her and only going downhill into serious decline starting Fall 2007). I would tell her, “I am devastated by pain. I cannot function. I cannot sleep. I cannot play. I cannot work.”

And what I remember her repeatedly asking, in a strange panic, was, “What are you doing for money?”

Not medically relevant questions. Not concern for my pain. But she would say, “Well if you are not working, what are you doing for money?”

And I would say, “Well my mate has a job and has the house bills covered and I have spent the last of an inheritance and now I am racking up credit card debt.” And I would think she was going to see how damaged my life was getting as the pain and debility consumed everything, and that she would have ideas, or that maybe if I ended up a hundred percent disabled she would say some program would help me.

But what I can see now, is that she was not functioning as my doctor.

And she was abusing me.

And if there is any lesson here, it is just that I must remind myself and others, if your doctor is not helping you, find a new one as fast as you can.

If they make you feel more alone, find a new doctor.

If you are crying in their waiting room and also their exam room and then you leave crying, find a new doctor.

For three years I would find myself sitting or standing in her exam room crying because my pain was so severe. Before this, I never really recall crying in a doctor’s office before, not even in the ER when I was off the walls with pain. Not even at the GI doc in early 2009 when I was in so much pain in my upper right abdomen I told Dr. Marzano I was going to lie down on the carpet at his feet by his desk and stay there until the next day when he could do surgery and relieve me from the agony.

(And wow, thank goodness now I think for all the docs who did not do surgeries that may have actually been unnecessary. Though my pain was severe and so inexplicable, I was certain that my abdomen would be opened, my gall bladder at least examined, and maybe this past Fall, my skull drilled into. I fear surgery, but figured I was at the places of last resort. And since pain was so unabated for so long and at one point had me considering chopping off my toe with an axe in the kitchen, surgery in a modern operating room seemed a better idea. To be clear, my toe never hurt. It was innocent victim. It was my upper right abdomen that for weeks on end in Fall 2008 was screaming and did not let me eat or walk or sit or lie down.)

The funny thing about the yelling doctor and the money issue was, she was always paid by me. I juggled other bills but with her I always paid my co pay, insurance was generous to her, I paid all the remaining balance, and when we parted company on March 1, 2011 (on the day she did not even take my blood pressure before she began her tirade against me), she actually owed me $7.00.

Compassion

While strange and hurtful things have happened to us while we have been in NJ, some events malevolent even, in recent months I have felt the resurgence of my compassion.

I see who is watching and quoting Jersey Shore and living vicariously through this MTV Show. It’s the bright young girls who work at Target in Middletown. No one is offering them opportunities to go to college. I want to scoop them all up and take them under a protective wing. I want to see the world offer them tuition and scholarships, a chance to do more and be more. They deserve more than the tv version of Jersey Shore.

I feel sad for people here. They have not been treated well and they have not treated others well.
Their lands and beaches are very littered.
They may have had subpar medical services.
They are too densely packed together.
A lot of their land is leftover Superfund site.
The affluent neighbors poison their yards all year round because they think that is what you do.
They compete and they are stressed and exhausted.
They try to outrun each other, and they run each other off the roads.
The roads are half pothole by this time of year.
Left turns are not permitted and jug handles mean changing ones mind or missing a turn are hassles and punished.
Things are very expensive.
Everyone is competing or being competed against.
So it actually sucks to be predator and prey, but of course prey more.

Look how tired the women look.

Look how no one has a hand on the wheel because there is a cell phone, a cigarette, a gold card, and then you need to flip someone off, so who is steering? Who is driving you? What is driving you?

The church is still very patriarchal. It marches down to Planned Parenthood and protests, while behind it the Catholic School girls roam the streets of Red Bank wearing the pornographically short skirts of their school uniforms. When school lets out in the afternoons, it’s like a strange Britney Spears music video, and it seems inappropriate that adult men would see so much of under age girl’s thighs.

And the church would fight so hard to keep family planning out of reach.

The people’s energy here, partly due to the crowdedness I think, is channeled collectively into sports and politics and church, and there is not a lot of room for the feminine or feminist spirit. For cooperation. For organic time or ways to use the land.

And these people bore the brunt of the terrorist attacks, and watched buildings fall, and breathed ashes.

We became afraid of people when we lived here.
Sometimes I had thought that all of the people in NJ needed to be sent to their rooms!
But this is changing.

There are all these sick and sad and lonely people here, and I want to help them. This is so much more like the real me. I have come through something, and while in the midst of it sometimes I did not recognize myself, I find at the clearing at the other edge of the woods, I am me.

I am myself, again.


(photo of graffiti taken Jan 2011 in Red Bank, NJ, on corner by 7-11. It reads 'Fall In Love' but also 'Ray is an Asshole' on a sticker someone took the time to make.
In NJ, the background is the foreground.)

My Father’s Blue Eye

I still see my father’s blue eye.
He is lying in the hospice bed, the bed of limbo, where he has outlasted so many “Last Rites.”

And he looks at me with his bewildered blue eyes which ask, “What happened here?”
“Really, what happened here?”
He shrugs his shoulders.

His eye remains resigned, but seeking.
He will die at 67, still wondering, what happened here?

Behind him the window still lets in the light,
And blackberries will ripen on their thorny branches as summer arrives.

He will stick around as long as he can,
looking for answers.

I can still see his eye.
And that look.

I carry that with me,
Amulet and memory.

April 8, 2011 Return of the Lawn

Last night I really did nothing but take a hot salt lavender bath and lie around in a bathrobe and watch PBS shows. I drank hot milk and spent time with David Attenborough and the king birds and birds of Paradise, and with Michael Pollan’s Botany of Desire, with the apple, tulip, cannabis, and potato. Sweetness, beauty, intoxication, control.

And then I slept six hours. (without drugging myself with Benadryl.)

I feel better.

The cat Goodness waits on the back porch and the cat Tiger waits on the front welcome mat.

Outside the green grass is growing, and the dog rolls in the dew, and eats a few crunchy bites for breakfast.

Someone honks in a friendly fashion and I turn and it’s the neighbor Bill driving by and waving. The father of the three small children.

Sleep, grass, friendliness.

I think prednisone and I are ready to gently let go hands. Thank You Prednisone.

I am well enough to make plans for the day, slow, gentle plans. I will try to get to the library. (The internet router died here at the house and I have been offline a few days.) I want to check in with the world, play a round of Scrabble, post these blogs.) I will go by the copy shop.

Tonight I hope to make chicken and dumplings.

Just yesterday I finished what may be the last call and did the last paperwork for my deceased father. Questions from Social Security include, ‘How did I spend the $5000 dollars he received from them last year. And did I save any of it?’

I know if I turn on the news today, I may find that the U. S. Government has shut down.
No Joke.

This was foreshadowed once years ago when my mate and I were coming back from a funeral in Virginia and while we were away the state of New Jersey had closed. Essentially that was the giant sign that greeted you when you got to the border, an arching electronic amber alert type billboard telling you the state was closed. And you think, ‘I live here, can I get back to the house?’ ‘Is the road closed?’ It’s a very weird feeling, and then the teachers and the policemen go without pay and the beaches and parks are closed and there is a simultaneous uproar and silence.

When I go into the neurologist on Tuesday I will be taking the paperwork I hope to copy today and telling her I want the porphyria DNA test. It is Time.

If it is positive, I will say please please get me some heme and let’s save my poor body before it’s too late.
And my family will be helped, at least 2 of them and maybe 4.

And is the test is negative, I might not believe it! (hahahhaha. It could mean error or that it’s not one of those three types but one of the other five rarer kinds). But even if it is negative (and if it is then I will pursue seeing a Lyme Disease specialist) and does not help me, at least I will feel we have kept research and testing going a little bit and if there is someone else out there suffering (as there are) maybe my supporting the testing will help someone else someday get an answer.

We must support progress in these ways.

So I shudder at putting a $2000 test on my credit card, but how will I use my credit if I am dead? And that amount is within reach, it’s not like the plight of the people desperate for new organs or stem cells or treatments that are in the millions of dollars. Oh world, you can be so unfair.

But there is lush green grass coming up, and the sky wants to turn bluer as the days go by. And I know of some daffodils in a field not far away.

The Broken Curse

My mate has flown to Missouri for a job interview, which if he is offered a job could land us in Missouri or Texas. Once upon a time I would have likely had strong feelings about this and aversions and concerns. At this point, I feel simply like we are all rising up from a long time underground.

I have learned that heaven and hell exist everywhere, in all communities, side by side. So no matter where you go, you might end up in either. Heaven might disappoint. Hell might have some pleasant surprises.

It is clear that I remain very much in only the present moment trying to get well.
Sometime I feel he will have to be sent on ahead to the Wild West and I will catch up as soon as I can.
(If this were the Oregon Trail I would have to be left to die on the side of the road or perhaps to be adopted by Yeti’s or a kind American Indian family.)

I cant figure if the doctors are going to have to do sudden surgery on my head or if I will drop dead from other causes, or if suddenly there will be a diagnosis or at least a treatment or a pill and suddenly I will find I have my life back, and this will all be behind me like a long bad dream.

I simply have no way of knowing. But I have survived so much thus far, I tend to think I will survive more. Even if this is just the prednisone talking.

So sometimes I want to pack a simple suitcase and meet him at the door and just say Lets Go. Partly thinking I can both take me with us, and leave me behind. Take me and leave my illness. Like somehow I and my illness can be parted. (Without me dying!)

But one reason I know the curse is broken is that for years it was as if we fell into a portion of the underground and we were all alone. It wasn’t just that we moved to suburban New Jersey, though the peculiarities of that culture must not be dismissed entirely. But it was more like we fell into a wormhole where everything was strange and upside down and different and we were ghosts and gravity behaved strangely and the rules we knew did not apply and the language we had did not communicate and we developed a bad case of face blindness and could not recognize people and they could not see us and each time we did make contact those people would quickly move away to different states, or they would die.
And we would never see the same people twice.

But this past week, I found three little children in my garden. Along with the three little kittens. The weeping cherry tree had burst into bloom, and little Avery and her brother Will and their tiny toddler imp of a sister Riley, all appeared with their father Bill, (the vet who is married to Christine, and who lives on the corner not far away, and moved in a year or two after us) and they came up close and I gave them eight dollars for a heart health fundraiser, and they stayed a long long time and were utterly charming and darling and flesh and blood real and funny and silly and magical as people can actually be.

They were like my beautiful niece and nephew.

So I know the curse is broken.
And there are many other things. Like Olympia being in my life and suddenly I have two good doctors and my mate is getting calls for jobs and the dog has begun to look like he has just integrated the last dog, who died as soon as we got here, and the realtor who was our good friend and sunshiney presence has reappeared, and the library has been redone with a café and wireless internet, and Tavolo serves the wonderful food, and the women at the two post offices are great, as are the librarians and the woman at the copy shop, and Sea Bright began a trap/neuter/return program for their feral cats, and our beloved vet opened his own practice in his house in our neighborhood, and Staple’s opened a great self serve copy shop, and Trader Joe’s (Hooray!)has arrived.

Now that I drive a taller car no one bullies me.

The wild blue yonder rose has survived its first winter.

The bulbs have multiplied themselves.
And I feel there are others in my life who are experiencing this same sensation of change, and rising up from the underworld, in their own daily lives.


(4-7-11)

A Goal

There is a field not far from here where many daffodils are growing.
On an old normal day, meaning in a good cycle before the Fall, that would have been an easy walk for me who so loves to perambulate.
But now it is very far away.
But I want to get there, on foot, or by car if I must, and take some photos of the yellow flowers.




Daffodils

I wandered lonely as a cloud
That floats on high o'er vales and hills,
When all at once I saw a crowd,
A host, of golden daffodils;
Beside the lake, beneath the trees,
Fluttering and dancing in the breeze.

Continuous as the stars that shine
And twinkle on the milky way,
They stretched in never-ending line
Along the margin of a bay:
Ten thousand saw I at a glance,
Tossing their heads in sprightly dance.

The waves beside them danced; but they
Out-did the sparkling waves in glee:
A poet could not but be gay,
In such a jocund company:
I gazed--and gazed--but little thought
What wealth the show to me had brought:

For oft, when on my couch I lie
In vacant or in pensive mood,
They flash upon that inward eye
Which is the bliss of solitude;
And then my heart with pleasure fills,
And dances with the daffodils.
William Wordsworth

The Owl People

I try to figure this out~Do I think I have porphyria when I am well? Meaning, is it just in the depths of my darkest sickness and despair that I think the diagnosis would fit? Or is it even when I feel better and survey the symptoms that I think I have it.

It is confusing because I am 41 and I have been ill since I was 14. Perhaps longer, but that was the first time medicine was really involved and the first time I was tested for lupus, and watched my life disappear as I went from sunshiney teenager taking morning tennis lessons to girl who had to live in the dark basement the rest of the summer.

And I have spent a long time ignoring or trying to rationalize some of the symptoms, like oh my feet feel broken because I stood too long in hospitals or oh my arms ached during my period because I had put on a few pounds or oh my hands can’t grasp well and I can’t grip things and my handwriting has turned impossible because I spent so much time on the keyboard when I was in school, and oh the clumsiness and squished eye and fatigue must be just the tiredness. And oh the head pains must be menstrual migraines since there is such a strong family history of migraines. (mother, father, sister.)

I want to learn what I have to help myself, but also my family, and especially my sister. I think we two have manifested the worst symptoms, both disabled through our twenties with excruciating pains that like phantoms never showed up on tests. But it is also true that my mother, and both brothers, and my father, have strange and severe health problems, and I hope and pray that some knowledge I gain might help them. And I recognize that the odds of porphyria at all are small and that the odds of porphyria on two sides is basically nil. So even this hypothesis cannot hold all the answers.

But my sister and brother and mother and I have always been so sensitive. And we were always like, “Oh, that light is bright” as we ducked and dodged the sun, and “Did you hear that?” as we heard something miles away that no one else heard. And “what is that smell?” from something that other people would not smell for ages if at all. And so a long time ago someone in our circle of friends began to call us the Owl People.

The Seventeen Day Migraine Leaves

The minute I feel better I am so enthusiastic. I write my self a note. “The 9+ Day Migraine is Gone. It left at 2pm on Thursday April 7th. I can see again!”

But then when I look at my migraine chart I realize it was a 13 Day Migraine.

And then when I look at my actual calendar, I see I was actually on Day 17.
It had been going on for several days before I started the migraine chart. Back when I did not realize I was going to hell.

Back when Dr. Chenitz pushed on my head and sparked wild fires and a tsunami.

Since I am on Day 5 of the steroids, Dr. Raab and I spoke and I told her I was happy that it seemed like now the migraine was leaving and I was just back to the bad right side head pain. I said my period was ending and so hopefully things would get better but that I was loathe to just stop the steroids. She said I should stay on them, on a reduced dose, for 4-5 more days and that would get me to my next appointment with her, and to use the benadryl for sleep as I had done the last three nights.

Yesterday I was thinking I would need an induced coma, and today I began to think soon I can bake some bread and write some poems.

I was unable to do the MRI today because as I was getting fully situated in the not at all open “open MRI” a wall of vertigo and revulsion swept through me and almost forced me to vomit. Some primal thing. I was very disappointed as I really wanted the test.

Darlene at Atlantic Diagnostics was very sweet and understanding and after I could feel my heart pounding and my eyes watering on the outside, I decided today was not a good day to try to continue. But I also learned that that particular test was only going to look at my jaw joints, and not my upper head around and above ear at all, and so maybe that is not even the right test. She told me about how she deals with severe vertigo and that there are tests for the auditory canals to look for neuromas.

So maybe it was all just as well.

The Humpty Dumpty Heart

I gather these supplies in a few slow deliberate motions~

Dried Lavender (from the holiday festival in Bellingham)
Hot milk (organic whole milk with a date, the dried fruit, in it, in a tea cup)
The heating pad warmed for three minutes
Stripey socks from Jessica Randall
A cookie which is more like a little pillow of a cake with white and chocolate frosting
Knowledge that my Mom or Jason will fly here at a moment’s notice
Knowledge that my mate will be home tonight
The blue fleece mermaid blanket from E.
The lavender sachet with the winged pig that says Miracles Happen
My notebook and pen
The phone

As I am gathering these items E calls and I tell her I will call her back in 5-7 minutes

I lie down with my supplies and talk to E on her birthday while I wait to get better.

Pain and prednisone served to knock my humpty dumpty heart off the wall today.

My heart got kicky and strange.

Last night, thanks to kid’s liquid benadryl, I slept but because I slept then I was “running behind” and took the prednisone later than I would have. And the pain Roared up in my head. And my heart went arrhythmic, just like a pump having trouble. And I said ‘Darn. Now that is just the kind of thing that really will kill you and how annoying is that.’

So I sat very still and calmed and calmed and calmed myself.
And pressed my hand into my chest and my breast, like I was laying my hand firmly on a shaken animal.

I sat very very still and said Calm, slow.
Calm slow.
Calm.
Slow.

The heart like a manatee.

Calm slow.

Every ten seconds or so it was kicking a huge beat. Kerchunk.

I pushed it down and warmed and cupped it.

Calm, slow.

***

Tomorrow there is the MRI if I can stand it. A call to the neurologist to see what she advises on the prednisone dose.

And I called Mt Sinai genetic testing lab in New York and spoke to a kind woman named Dana, and she is sending me the paperwork for the triple test for porphyria that I want done. It tests for the three most common kinds.

I think I now have Advanced Porphyria.

If its not that, it is Porphyria’s twin.
If it’s not that, it is Advanced Something.

But I believe this,

That all the Queens’ Horses, and all the Queen’s Men,
Will put Humpty Dumpty Back together again.

I brushed myself off from the fall.
I climbed back up on the wall.





(4-6-11)

Kittens in the garden

It is that idyllic time in between litters.
My heart is bursting with cats.

There are three beautiful kittens in the garden chasing bees.

(I have gone so far as to call the vet and order Revolution for all of them.)

You can see how well Kaboodle is doing, as she takes the time to stop and smell the flowers.

She has become so friendly, and sometimes now she comes when called, and I pet her each day.

Make no mistake, she is not tamed, and she will move off as fast as a small bird, and I can’t pick her up or anything like that, but she will come over and get her head rubbed and push her cheek and shoulder and hip against my hand.

Sometimes she has the emerald green eyes of her mother Shaka Zulu, the cat whom we now just call “The Mother”.

The Mother of All Cats stopped by the backyard this morning. She is growing lean with motherhood and nursing as she births kittens somewhere off in the neighborhood.

Then one morning, we will wake, and they will be here, here in her weaning grounds, as she tucks them under the playhouse, and teaches them how to eat young rabbits.

This began when we were away in Africa.
While we were on safari in late summer 2008, she was here, expanding her territory into a dog free backyard, a peaceful quiet field of sand and moss and violets.

The dappled shade of the foodchain.

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.