Dr. Carolyn Taylor, first Visit

Oh So Glad I Went.
Could hardly get out of bed to make the 9 am appointment but thank heavens i was able and did.

She has ideas. She was able to pull up my MRI. She was born and lived for four years right on the same river where I now live in NJ. She took my insanely complicated set of problems and made it simple, in a methodical way, without making anything seem overly simplistic.

Plan. Get the neck MRI. Follow up with Dr. Yin for pain management for right sided head pain, occipital neuralgia etc as this seems mechanical and may be helped with joint block injections.

Try Amerge for menstrual migraines. Begin at sign of aura preceding period and take a half dose every twelve hours for first many days of my period.

Get more blood work. Tests that have not been run. If any of them come back positive she will be sending me on to the rheumatologist.

Go see the infectious disease specialist Dr. Claire Beiser. Tell her whole story and yes can also ask her about testing for toxoplasmosis.

Come back to see her in a couple of months, after I have gotten through a few cycles with Amerge.

Be cautious about treating for Lyme. She thinks that it should show up on a test since I was not ever early on treated with antibiotics. If we really think it is Lyme, she does recommend an lp.

So I have a lot to go on.

And I am glad about this.

It wasn't an easy night as I am on Day 13 of the plague, but I got through. The scale at the doc's seems to say I have lost 8 pounds in two weeks but I know I will regain it as soon as I can eat more than chicken soup again.
My bp is coming down. Now it is 142/98
My pulse was 72


I had a moment of intense claustrophobia while in the treatment room with the door closed so I talked myself down and then went to look at a magazine to distract myself.

I rely constantly on distraction to keep myself going.
There is a lot of power in distracting the mind.

Now I just need to get stronger so I can go and get a lot more blood drawn.

$400 more dollars on meds

The cost of keeping a life going, or trying to keep it going. I don't even know if they will work but I read studies saying Zomig nasal spray works on cluster headaches and migraines. And Dr. Hopper wanted me to try Maxalt. And since I still had a fever on Day 11 of the Plague, the doc said start antibiotics if I wasn't getting better and I decided they would be good to add to my arsenal, so I am least filling the rx.

Lots of twitching in my left side head today. Poor skeleton, poor nervous system, poor pegleg pirate, poor this who is me.

Tomorrow to the new neurologist, Dr. Carolyn Taylor

Day 11 of the Plague and a visit to Dr. Hopper

6-28-11

Good to see Dr. Hopper today. I feel better when he listens to my heart.

So, Day 11 of the Plague and I have a fever and high bp. He says if i am not better in three days it is time to start antibiotics to ward off pneumonia.

The office staff has me wear a mask while I am in the waiting room.
It is soft and yellow.

He does allow me the Zomig, writes an rx for antibiotics, tells me he doesn't mean for me to slip through the cracks but it is true, I don't even fit into their between the cracks diagnoses like fibromyalgia. He tells me he will re read my two paged typed letter to see what he comes up with, tells me to see the new neurologist, tells me to get the neck MRI.

Darkest before Dawn, and my New Plan

Almost ended up back at hospital last night as I was a week into the Plague and it was deep into my chest I thought it was going to break my bones. Could not breathe or stop coughing and the day had just made me weaker and weaker. Had tried to walk for fresh air and was too weak so was back in bed for the third day. And since bp had been at 155/111 the day before and my lungs had turned to swamps, and that morning I had woken with the myalgia arm and leg pains, oh dread, I was finally about done in, Oh did i mention severe crackling head pain and red swollen eyes? and after midnight found myself crawling on floor crying. A real low point. But I took a lot more codeine cough syrup and went to bed and slept 6 hours and awoke feeling psychologically better. The cough still has me but I can breathe.

So I have a plan. Get tested for toxoplasmosis and malaria.
See the neurologist Dr. Taylor this week.
See Djuna Harper as soon as I am well enough to talk.
See the infectious disease specialist.
Get on waiting list for neurologist at headache clinic at UW in Seattle. Dr. Lucas?
Begin Dr. Streit's rx for Lyme plus coinfection as soon as I am well enough and as soon as porphyria tests back.
Begin the berberine I self prescribed very soon.
Know that I can begin treatment with Dr. Yin's pain relief injections once I get better enough to hold still and tolerate a procedure.

So it is good to have a plan.

And today I will keep my fluid and medication intake high because I think I slipped up yesterday and the pain and the virus crept up.

I know i am feeling better because I looked forward to swimming in Texas in a pool to rebuild some strength, and to maybe getting a small dog, and for my mate to have contact with horses, and maybe he wants to have a little cow.

Cure Unknown by Pamela Weintraub

Thanks to my Mom for the book. Finally able to start reading it today after many weeks of being too ill to read. It does sound like what I have, and I am so sorry about how much suffering there is in this world.

i get excited about Bactrim (sulfadiazene)

6-25-11

So I am in WA and down with the plague and the more I put together the puzzle the more it seems I do have an infectious disease like Lyme and co infections etc and I have thought for over a year I just needed any treatment, trial and error, even without a diagnosis.
But when the Lyme doc said Bactrim I was stumped. Have not heard of used for Lyme etc or the co infections.
So i just kept researching teh past two weeks.
And i was reminded again that I want to be tested for toxoplasmosis.
So as i was researching toxoplasmosis, I learned that Sulfadiazene is used to treat toxoplasmosis encephalitis.
And malaria.
And meningococcal meningitis.
And as a prophylaxis against recurrence of rheumatic fever.

Sounds good.
So now if only I could get the porphria results as of course Bactrim is on the list of drugs to avoid.

Whatever the plan at this point I just have to get better, get rid of the plague, get well enough to actually pursue antibiotic therapies or joint block therapies.

I am trying to get better. I still have a lot of will.

Zomig

I read online that Zomig may be useful in treating migraines and cluster headaches.
I will ask Dr. Hopper if I can try it.

Dr. Way Yin Pain Specialist

6-23-2011

His office staff was exceedingly pleasant and professional. I enjoyed a cordial talk with the friend of a couple who were in to see the doc. I let them go ahead of me as the poor gentleman could not sit down at all.

Sara the nurse was one of the kindest most present people I have met. She asked such things as did I mind the lights on and was I claustrophobic when she closed the door. And I thought Wow, someone, maybe the only one I have ever met, who understands.

She has MS and is disabled now, she says. But she loves her work and used to be an ICU nurse and so Dr. Yin has in her sometimes. She was wonderful. And she recommended her own neurologist in Seattle, so I am also pursuing being seen there at the Headache Clinic and MS specialists at UW.

I was not feeling well and my bp was 155/111

Dr. Way Yin was fascinating. Confident, calm, well spoken. A showman also. The funniest thing was that I had the clear sense that he was a powerful being, and I don't mean a doctor. I mean an element, or a shaman. Like he contained sunshine, something old, fiery, solar.

It was all Very Crouching Tiger Hidden Dragon. As he talked to me I could see him, and what I saw was some being who was standing behind a very clever facade of a doctor, a tall handsome Asian doctor. But it was like this being was holding Dr. Way Yin up in front of him, and that he had come here and assumed this shield, this costume, as the best way to help people.

Yes, I know I sound crazy.

Dr. Yin is spoken of highly.

I am fascinated that he thinks alot of my head pain may come from my neck.
You know, I think he may be right.

I leave there glad there are options that might bring me relief.
Though I think getting injections into one's facet joints sounds so Frankensteinish.
And when I read the literature about the prep, where someone has to drive you, and you go in and are given an iv, and then the procedure, and this process of trial and error perhaps over many sessions, then I think Oh Why is this my life?
I am so weary.

But of course I am grateful I have gotten to see him. Because if anyone is going to inject my head and spine with needles, "Better you do it than I do it" I told him, explaining I have at times considered self medicating with an ice pick.

And I actually appreciate that he breaks down the probablities in a very basic scientific way. He says it is likely I have cervicogenic headaches. That he would begin by doing joint blocks. If that did not help he would consider that it might be the discs. And if not the discs then it was probably the nerves.


A few days after I see him his office calls and tells me he wants an upper cervical spine MRI. I agree it is a good idea.

Berberine

For many weeks I have had this intuition to get myself some berberine.
Perhaps in an effort to boost my own immunity.

Many years ago I used it off and on to treat strange skin infections and other symptoms I would sometimes get and it was always like a friend to me.

I just called John at the Natural Health Clinic and ordered some.
I will pick it up tonight, from the box on the porch of the healing center I managed oh so many years ago.

Letter to All Re Advanced Lyme Disease

I sent this email out to friends and family to get their ideas. My own brain has so much pain and muddling I particularly welcome others impressions.

How it is:

Probable exposure to Lyme in summers 2005 and 2006 with many tick bites in PA, NJ, VA and both dogs getting Lyme Disease

Mystery Illness-for 4 years no one can figure out what is wrong with me

Voodoo Quality=Neurological

Lyme Expert believes it is Advanced Lyme (plus a coinfection)

Other doctors (PCP’S, MD’s, ER Docs, GI Docs, Neurologists say it is nothing they have known but yes I am very ill)

Severe Head Pain and Tweaked out Agonizing Cranial Nerves
(Crushed palsy like symptoms on right side of face and head but no one but me seems able to see or feel but it is extreme to me)
(and seems to have migrated left also in past two weeks so now I have lots of weird twitching plus pain)

Constant “aura” floating bits in eyes since 2008

Stiff neck, neck pain (this was worse a couple of years ago but still flares up)

Joint Involvement= shoulder blew out 2007, then head, then left knee, and spine hurts also, and feet

Migraines (off the charts head pain) that don’t respond that much to the traditional migraine meds (goes on for 972 days)

Sometimes cannot walk as leg and head are so bad, knee blown out

Wake up since Nov 2008 drenched in sweat at night, in a delirium, like I have malaria (Lyme doc says this is likely babesia, other docs have no idea what this is)

Since Nov 2008 am almost obsessed with instinct/intuition that I have a parasite, that this thing attacking me is not me, but an invader, and I am trying to get away

Anemia
A period of heart involvement and palpitations
Extreme Disruption of Sleep due to pains, fevers, night sweats, head and leg pain like I want to die
Weakness in hands and clumsiness, trouble swallowing, all sorts of things that demonstrate my cranial nerves are being tormented
Sensitivity to light, and to sound like my head is made of paper
Hyperacusia, Vertigo

It is progressive, spreading, and debilitating.

I have thought for a couple of years I just have constant undiagnosed meningitis

Got much much worse on 3 weeks of antibiotics earlier this year which yes the Lyme Specialist says could be Herxheimer reaction (and oh god I dread that)

I remember once waking up a few years ago in a sweaty blur and looking over at one of the golden retrievers who was really ill and also sleeping ten hours and he raised his head at me, and I was like oh I am so sorry, we have the same thing, what is this? And then we both passed back out into our fevers

Since summer 2005 when I got that worst ever case of systemic poison ivy, it has seemed that something old and primal and African has been after me, as evidenced by dreams and hallucinations and nightmares, (this was 3 years before we actually went to Africa) and that poison ivy time is possibly also when I got exposed to Lyme, the same time I had the bad poison ivy which might explain why I never saw a rash, or maybe I never even got one (not blaming Africa for my illness! Just saying the immune system and psyche has felt it is up against something powerful/potent/nefarious from early evolution) And my dreams/nightmares are always saying this is something masquerading as something else, something in disguise, masked (oh never mind, maybe you know what I mean!)

I saw that girl’s video on the internet and she was me=mind-blowing life- ruining head pain plus joint pain so bad she couldn’t walk


How it is not like Lyme:
Something was very very wrong with me before 2007 also
Crippling fatigue/ hair loss/weird body pains/ allergies/awful periods/ neurological weirdness/ atypical seizures, blood sugar weirdness etc, some disease my whole life

The dizziness when eating slightly precedes Lyme exposure, I think? Maybe not? Around the same time maybe…
Crushed right eye and diminished vision in right eye slightly precedes Lyme exposure

The labs don’t show Lyme (though this is common/typical)

The way that it erupted in my head and upper right ab in Fall 2008 and landed me in the ER 3 times doesn’t seem like Lyme exactly but what the bleep was that? It almost killed me. And it continues…

Other docs are concerned I have MS, multiple sclerosis, and it is true that my symptoms do match MS, and that the MRI of head could be interpreted that way, but really, I just don’t think it is MS, or if it is MS, it is secondarily that and first something else…

Just sending this to you all in case you have any other thoughts…working with a Lyme Specialist in NJ that I like, (Dr. Streit)
and about to go see the Pain Specialist in Bellingham tomorrow (Dr. Way Yin). I retain some hope.

Hope you are all enjoying pain free days.

Dr. Streit Returns My Call

6-22-11

I have had a nightmarish week or two. Night sweats. Period. Migraine. Did take more Imitrex. Flew to WA. Contracted the Plague. The sickest I have been in ten years. Came to help my sister and instead had to go into quarantine in a room across town.

Searching for answers I call the Lyme docs office to see if I can get my three questions answered.


Even if by some stretch of the imagination he were a quack (and i am not saying i think this) I am so grateful for how kind he is. He is quiet and calm and unassuming.

He has run tests and offered treatment. His office staff is so congenial and so professional the care begins when you talk to them.

I had Three Questions for the doctor so I called and said I was out of town and could I please schedule a phone appointment and absolutely I wanted to pay for his time. (He books fairly far out.)

They said No problem they would have him call me.

Within an hour, he called. I said Thank you and that I wanted to pay him for the consult. He said it wasn't necessary, he just wanted to answer any questions I had.

My questions:
1. Should I get a lumbar puncture to better confirm diagnosis? He said No, it only shows up that way about 5% of the time.

2. Was my getting worse on those three weeks of antibotics in Feb a Herx reaction? He said Most likely.

3. If I was concerned about a reaction to Bactrim could we start with another antibiotic? And he said try the Bactrim but at a lower dose for the first three days and see how I tolerate it.

So here is how I feel. I am afraid of getting worse without treatment or intervention, as has happened over the past 3 years.
I am also afraid of getting worse while on the treatment, as is common in Lyme patients and as did happen to me earlier this year.

But look, I have this doctor who has an idea and who wants to help me.
Meanwhile, My two PCP's seem to have just given up, the neurologist has not contacted me in two weeks though I sent a letter and a fax. I had to fight hard for the porphyria test and the results are still not back seven weeks later.
It is two weeks later and for some reason my left arm is still green and sore and bruised from that last series of hormone blood draws.

And it was about a year ago when i was like, I am so sick I think we had better just start treating me with something. Try antibiotics. Try anti virals. Try anything. Because I am not getting better on my own.

Am I in a Void?

6-14-11

Dr. Ponti and Dr. Raab never called back since my crisis visit and letter of last Tuesday, a week ago, so I had no instruction at all on what to do next.

Yesterday I called my PCP in Bellingham for a referral to a neurogist.
No one called back.

I called a new neurologist many times and left a message. No one ever answered and no one called me back yesterday or today.

No word from anyone.
I do not exist.
And so it goes for years.

My sister goes in for surgery tomorrow. I'm scared. All I know is that she is in such severe pain she has no choice. Please all pray for her and wish her well. She is precious to us all.

*
I am very scared about tomorrow but thank heavens there are surgeons.
I know she is in so much pain.

Lyme Results Visit 2 to Dr. Streit

6-14-11

As always his office staff is so nice. As is he. He reviews my many lab results. Nothing really shows up though, not in the Lyme, not in all the co infections. He has also tested me for hepatitis C and while I did not know he was going to test me I am glad he did, why not? and glad it is negative. Epstein Barr virus values look high to me. Again, maybe a virus is part of this puzzle I think.

He says that even though the lab tests did not show Lyme or co-infections, he thinks we should treat. He says my tests are suggestive of Lyme. He also says I can of course get a second opinion.

He recommends I start with a month of Bactrim. Sulfamethoxazole. One 2x a day.
Take acidophilus in between.

He warns me about the Herxheimer Reaction, where one gets worse before better.
He says the first month is the worst and then you begin to see benefits.

And I wonder is this why I got so much worse on three weeks of Augmentin earlier this year?

well, I am glad someone wants to do something.
I am not getting any better on my own.

maybe it is MS

pondering steroids as brain feels like a sizzling volcano and i read that steroids can be used in both flare ups of lupus and multiple sclerosis, both of which have been considered as possible diagnoses for me

trying to buy self time and life

i decide to return to Bellingham for treatment

I like my NJ doctors now, but it is also as if no one cares. I am deathly ill, no one called me back after I saw Dr. Ponti on Tuesday (today is a week later) and she faxed my letter to Dr. Raab. I need help. I am exhausted. I am going to go to WA and get the best care I can. I want my life back. I want my life.
I have called my PCP out there in WA and requested a referral to a local neurologist since my head is not only in pain but since I have left sided twitching in head and leg.
I can tell the rest of me is trying to blow out.
Heather at my doc's is very nice. They will call me back.

Ok, I must get things in order here.
I hope to be able to help my sister in her recovery from back surgery and to take care of my medical needs also.
6-13-11

the confusions

Yesterday I could not find the words for things.

Today the problem is sort of memory.

I walk room to room looking and forgetting what I looked for.

I put a bill in the mail, and then couldn't recall if i had put a stamp on it.

I took it back out. I had not put a stamp on it.
But i had put a label with my return address on it in the corner where the stamp goes.

I am suffering brain damage.
And no one seems to be able to help me.

And the twitching and the pain continues.

6-13-11

head spasms and twitching continue

6-13-11

So it moved to the left side of my head.

My left leg also twitches.

The left side of my head gallops, it twitches, it thrums.

The right side hurts and aches and makes me almost nauseaus with pain.

I will never be able to spell nauseaus right.

I call doctors and make no progress.

On exception is that I reach Dr. Streit the Lyme Specialist's office and they are so very nice. My results are in and instead of waiting until my appointment next week, they will see me tomorrow.

galloping in the brain, no more imitrex

6-12-11

whatever it is in my right side of head has finally also moved to the left

and since the imitrex today, there has been a strange galloping on that side, like strange strange spasms

i will not take more imitrex this cycle, though it was the first one since last cycle


i am losing faith even in my new shiny doctors

it is not migraines, it does not respond to migraine medication much, and i have side effects, and i need help

how could i be a young person in modern america with health insurance and even once upon a time some cash, and i cannot get medical care that helps? how can this be?

Gamma Knife

I am thinking about giving myself a hysterectomy.

Since Nov 2008 when my pain exceeded my ability to endure it, and has never left,
I have had moments in which all I could imagine was suicide or self mutilation. Something else to take the place of pain.

I look at the front of trains differently.

Back in 2008 and 2009 when the abdominal pain had me doubled over in its fist, unable to sleep or eat or walk, I recall looking down at my feet and thinking I would sacrifice a toe.

I have had recurrent thoughts of putting a knife through the upper right abdomen, to distract the pain, and so that maybe surgeons would go in and find something.

I consider an icepick to my head.

Now that my period is three days overdue and will not come, but kills me nonetheless, I think of giving myself a hysterectomy.

The body and mind have failed and cannot take more pain.
They cannot take what the period puts them through.

Modern doctors have developed a new tool, a gamma radiation knife that they use here in NJ to treat illnesses like trigeminal neuralgia.

Yes, please sever me from these screaming nerves.

The Beaver

A little red beaver has moved into the pond. What a joy to behold. More miracles of nature! Here is the Medicine Card Symbolism:

Medicine Cards: Beaver 1
22 - Beaver: Builder
Beaver is the doer in the animal kingdom. Beaver medicine is akin to water and earth
energy, and incorporates a strong sense of family and home. If you were to look at the dams
that block woodland streams, you would find several entrances and exits. In buildings its
home, Beaver always leaves itself many alternative escape routes. This practice is a lesson to
all of us not to paint ourselves into corners. If we eliminate our alternatives, we dam the flow
of experience in our lives. A doer is characterized by industriousness, and Beaver knows that
limitation cancels productivity.
Beaver is armed with very sharp teeth that are capable of felling whole trees. Imagine
what those teeth could do to the limbs of predators. From the rear, Beaver is armed with a
paddle-like tail that aids in swimming as well as in guarding its behind. This tiny mammal is
well equipped to protect its creation.
To understand Beaver medicine, you might take a look at the power of working and
attaining a sense of achievement. In building a dream, teamwork is necessary. To accomplish
a goal with others involves working with the group mind. Group mid constitutes harmony of
the highest order, without individual egos getting in the way. Each partner in the project
honors the talents and abilities of the others, and knows how to complete the piece of the
puzzle that belongs to them. In working well with others, a sense of community is achieved
and unity ensues.
If Beaver has appeared in your spread, it may be time to put your ideas into action or to
complete some project that has been neglected. the Beaver card could also be asking you to
settle differences with fellow workers or friends. Beaver tells you to look for alternative
solutions to life's challenges and to protect the creations which you put your love and energy
into.
Sometimes Beaver brings you a warning to watch your back. If this is your message,
you will know it by the position in which the card falls in your spread. If the card falls in the
South position, it is to remind your child-self that trusting is okay but caution is necessary.
Use discernment and all will be fine.
Contrary
If Beaver has dunked its head under water and is contrary, you are being asked to open
new doors to opportunity and to star aware. This could also usher in a time of laziness or
apathy. Find what is damming the flow, and remove the impasse. The questions that may
arise when Beaver is contrary are: (1) Have I forgotten to allow room in my life for new
experiences? (2) Am I willing to work with others? (3) Am I resentful of having to work?
Medicine Cards: Beaver 2
(4) Do I express my creativity by doing, or just be dreaming about it? (5) Has my mind created
so many obstacles to productivity that I feel like a failure before I begin?
Meditate upon Beaver's determination and willingness to work. Visualize the goal you
wish to accomplish, and be willing to work with others to achieve that end.
Overview
Beaver is the construction worker of the animal world and its dam-building methods
characterize its industriousness and productivity. As a power animal, Beaver stresses the
power of work, and especially of teamwork, to accomplish what is necessary and obtain a
sense of achievement.
Beaver as a power animal can help you to develop more harmonious relationships with
others, and acquire a sense of involvement in any project. Beaver's practice of providing
alternative ways of entering and leaving its home is a reminder that there is more that one way
of solving your problems. Beaver is also cautioning you to protect what you have achieved or
acquired through your own efforts.
If you are currently engaged in any creative endeavor, Beaver is encouraging you to put
your ideas in practice. It is not enough to be a dreamer: you need to be a doer if you want
your dreams to become practical realities.
Be constructive in all your endeavors and look for ways of providing alternatives.
Work at it.
Make today count. Build toward manifesting your dreams and goals
Source: Sams, Jamie and Carson, David. Medicine Cards (Santa Fe: Bear and Company, 1988).

Olympia Session 12 (and a man named Michael)

6-9-12

Session 12! It didn't happen! Ha ha ha. I just didnt need it and wanted my friend E to have time for a double treatment. My friend was very blue and Olympia was very yellow and they walked down the hall, two goddesses, two beautiful birds.

I feel how Olypmia lives in a certain oracular place-and she helps you-she is your Helper, your magic friend, during that part of the journey.

Bless Olympia.

I aspire to always be a helper also.

Let's hope we can make ourselves the best we can be.

Swollen Gland

Ha ha ha. I made a note to write this on 6-8-11 and now it is 6-30-11 and I am playing catch up. What I do recall is that in the Fall when Dr. Hayward did an exam the week I ended up at ER that she pushed on my right side lymph glands and I was surprised to find that it hurt so much, but I filed it away under "oh, one more pain." But this month glands seem swollen and swelling and so now I wonder if ER was right that there is some virus involved in these weird neurological episodes.

my baby sister has to have back surgery

and as i read about it i just want to cry and throw up.

she is very strong and i pray she will recover quickly

but i am scared and sad. i feel like we are the walking wounded.

it is bad to have one's own suffering, and it is bad to see the suffering in one's family.


who is not mad at god?

who on this earth is not mad at god?

they did not have my life.

6-8-11

Chin above water

Chin barely above water, but still above


This blog is how I keep my head above water at all. Or one of the ways.

I can’t run a marathon so I at least try to take my bearings.

Lewis and Clark where are you?

In a dark time, we reach out.

The guys lost in the desert
or women in a blizzard,
marks on a prehistoric cave wall.

A marathon of the fingers.

A hope.

It’s a message in a bottle for the future self.


6-7-11

Elliot Spitzer

Elliot Spitzer

What does Elliot Spitzer have to do with the name I am looking for? I have no idea.

But since Friday’s blow out of my brain I am again seeking words by association, or by the back door, as it is as if I am concussed or post stroke.
And just when I had been doing so much better in that department.

Now it is as if again, someone has come and closed part of the exhibit.
Closed for maintenance it says.
Closed until further notice.

A white gloved hand comes out and says Shh.
The maroon velvet rope is drawn.

It’s the escarole issue of earlier this year.

So I wrack my brains. For two hours I have come at this problem from various angles. I persevere, then let it all go and come back later.
What I am trying to remember is the name of a Russian singer and pianist I like.

It's not Elliot Spitzer. It's not Vera but I hang on to Vera as it is Russian and brings to mind Nabokovs wife and butterflies.

I can hear Milla Jovovich singing and so I sing in my head too, "Hello Sunshine, Please Don’t Fade Away"….and I love Milla, but that is not who I am trying to think of.

The closest I can get is Elliot Spitzer.

Also Roberta comes to mind. I can see her at the piano. Want to also call her Lola. She has reddish hair. She is young. My sister and brother also like her. She is fringe but popular at the same time. She is not that other female pianist I cannot think of. Oh yes Tori Amos, she is not Tori Amos. But they are linked in a similar directory.

Elliot Spitzer? There must be some connection. I don’t just hear his voice, I see his face, see him making a public apology.

The song I was thinking about Her is about a lost wallet. I still want to call her Vera. Or Nora. But not Nora Jones.

The song I like about the lost wallet is also on a cd with that woman I like a lot whom my sister also likes, the Maneater song about the killer whale, and long long ago I saw her in a tiny bar in Bellingham and got to sit so close to her, oh yes Neko Case. So great to be that close to the music.

Elliot Spitzer.
Are you both New Yorkers? Are you Jewish? Why do you overlap in one of my filing systems.

Oh woman singer Vera Elena Helena Rubinstein Emma Golda Meir Roberta Flack Starry Night Van Gogh do you know where I am coming from Elliot Spitzer. Woman what is thy name?

The wallet, by….?

Vera Goldstein

Ruby Clementine. No, further off. Max. Max? Maxine Star? Definitely not.

Ok Elliot Spitzer.

Escarole.

I ask my mate if he knows any young Russian women who sing and play the piano.
He laughs and says, “No. But I am sure there are a bunch of them.”

Vera Bradley Wang.
Ellen Spaetzle Degeneres. Jones. Quincy cataract complicit character wallet elliot spitzer vera nabokova butterfly lost wallet maneater alligator.

Ok Voila! While I was in the shower, the shower waterfall often helps, I kept hearing my brain saying Roberta Flack Roberta Roberta Roberta Elliot Spitzer, and then I could sort of see the singer's face and hear her music, and I got the name
Regina Spektor.

Regina Spektor.

Elliot Spitzer. Robert Flack.

Regina Spektor.


Tuesday 6-7-11

Dr Ponti June 7, 2011

Dr. Ponti

6-7-11

It was just supposed to be another blood draw for the second hormone panel but I was so ill and she is so kind and professional that it turned into an appointment.

I was up all night with crackling head and the right and Left side were hurting, like a pair of wounded animals and so I just could not sleep.

There was this strange and terrible coursing sensation, its like some weird pulse, pulsing that is not my own really and it was just shooting pressure up into my head. It made me wonder if I had a tumor in my heart, or somewhere mid section, just something, some endocrine type tissue that spontaneously misbehaves.

Is it the lymph body? It is like the circulatory system but not exactly.

Does the chicken or egg come first?

Because Friday, three days ago I had the neurological episode, and then as we get closer to period, pain and weirdness increases.

So after Friday’s neuro blacking out 3-4 hour episode, I wrote that quick note to Dr. Raab and Dr. Ponti that I think I need more imaging of that right side head, because it seems like I am just going to blow out, so I took that to Dr. Ponti today.

She was concerned because I was in pain and hadn’t slept. I did drug myself with Benadryl at 4 am and then slept 4 hours, hitting the snooze button for 45 minutes before I could even wake up.

So my bp was at 130/100. It is rising. My temp was normal. My head pain today is not severe.

Oh and last night I had considered taking Imitrex but with the weird coursing in body and strange pressured sensations I was afraid to take it.

And I wonder about this being a musculoskeletal disease on some level, as my feet so often hurt and for a small moment this morning I thought my head was not in pain, a blessed absence, but then as I began to have my day and turn my head side to side and chew etc, it got angrier.

What is wrong with my bones and muscles?

So anyway, Dr. Ponti is so Present. She was concerned and says she thinks maybe I should have an MRA next, which looks at the blood vessels.

And she is faxing my letter down to Dr. Raab and hoping to consult with her.

We got blood out of me, after some painful challenges, and finally using the large veins down near my left wrist. I leave bandaged up but at least feeling I have two doctors very much on my side. We shall see what they say. I wonder about going on steroids again. They didn’t make the pain go away, and they had some side effects, but at least they helped me stand the pain better.

Two Emails

Two emails come in back to back.

One from Dana at the porphyria testing lab in response to my request for an update,
She says the test is still in process.

One from Thom Gale at the funeral home, they have installed my father's gravestone.
It looks nice.

Now just to plant some greenery and scatter some corn for the ducks.

Olympia Session 11

Olympia Visit 11

She was so sick of seeing me she gave me a black eye. I am kidding. She is ready and willing to treat and always of good cheer and positive attitude.

Yesterday this only served to make me feel pissy!

So please know what I say here is not a reflection on her but of where I am in my process, which is exhausted from pain and agony and shock and lack of answers and I am realy so isolated, not that my mate and family and friends aren’t loving and supportive, but I am trapped in a very small claustrophobic room the size of the body and I am running a constant soundtrack of pain and suffering, and so very locked in. And it is horrifyingly lonely in here but god I would never want anyone else to join me in here.

But yesterday I just had this attitude during my session of “you don’t understand” which I know she doesn’t, and no one does, and I wouldn’t either if I weren’t in it myself, but I am at the point where people’s recommendations to not eat sugar or to think positively are very irritating. I know people mean well…

The one area Olympia and I have always been divergent on is that I very much want to understand a reason Why, and she doesn’t need to know why. And it is true, thankfully, her treatments help even though we don’t know why I am in so much pain.

Well anyway, I hadn’t wanted to go in at all because I am just so tired of being a patient and being a client and I feel I am tethered to a schedule of medical appointments, which I am.

So much for Gratitude! But feelings ebb and flow don’t they? It is natural. And also since Friday when I had that neurological event I am just irritable and angry and pissy and sad, which I don’t really think is the soul either but probably some chemical debris in the brain or blood.

So anyway, I had a goal for myself, which was to get back to a goal, and that by the end of the session I would know what to work on next, and on the drive over before I even got there, I decided to write about how I Am in A Battle for my Life with the Corn Shaman, even though Shaman is not the right word probably because shamans don’t try to kill you. So it's something else but what do I call it, a witch? A virus? A dark figure? Who is it? Reveal thyself! Is it a jack in the box? Is it me? Am I in a battle with myself? Are those nightmares all mirrors?

Well I have begun to look at things in a dfferent way. When I look at the front of the moving train I think I could jump in front of that, that might cure head pain. Today I thought well really pills are probably an easier cleaner way to go with less impact on others. And don’t be alarmed. I think pondering suicide is just a very natural reaction to unremitting pain. And I am not planning on doing anything but trying to keep living.

That said, Rest In Peace Jack Kevorkian who died this week, and whose efforts to bring some control and grace to death and dying made him a hero for me.
And so it goes. We are all going to die. And it would be nice if life could tone down the volume on pain.

Yes is there a volume button?
I need the volume button on my pain to be turned down.

So I decided to write the Corn Shaman story but it also occurred to me I had written it in bits and pieces over and over again, so maybe what was better was to get back to writing my kid's book And I decided to do that. It is an impossible task but it is important.

So then I had my Olympia session and she roller-pinned my neck and shoulders and stretched my flesh and I do think it is good for me, but after this Thursdays session I am going to take a break. Somewhat for financial reasons. And burn out. And so I can rally my little energy to get back to my desk and write.

So in my book there is a scene where the character goes through a dark tunnel of an initiation and her eyes get sucked out and then put back after they are cleaned.

Well there were some funny little things yesterday.
Olympia appeared looking summery and wearing a lovely purse that looked like it was made of seashells woven together and I said “What a lovely seashell bag and she said "Thanks" and came closer and said, "Its from Africa and look its not actually shells but magazine pages rolled into beads.”

And that she liked to support the women of Africa. As do I.

This constant reminder that things are not what they seem.

She also offered me two good bits of advice I appreciated. Two days ago I saw the most beautiful baby beaver at the pond, and she said look up the symbolism of the beaver in the animal cards.

And also I talked to her more about the crumpled ball in the right side of my head and we talked about me continuing to visualize that it gets smoothed back out.

And then on the table I asked her what her patients with acoustic neuromas were finding helpful and she described it and said some of the same things she did for me, and also this technique, to open the eye sockets, and so then she put her fingers under my brow bones, in my eye sockets, and I did not so much like it, but felt alarmed, and my eyes tried to open but were pressed into a claustrophobic darkness, and then after a few minutes I did open them.

When I left, I had bruises above my eyes. They are gone now today.

As for true teachers and healers, for that relationship, I feel

You don’t have to like them. They just have to hold steady and do their jobs.
And she does.

Self Surgery

Again, I repeat


Tempted to do self surgery but who would hold the mirror?

Really, ready to take a serrated grapefruit spoon and scoop out that part of head, and also lumps in lower left leg. It is like these parts are now rotten, painful, disruptive, and preventing the rest of me from moving on with my life.

Dear Doctors

June 4, 2011

Dear Dr. Ponti and Dr. Raab,

It is like I have a ball of lightning in the right side of my head. It is excruciating.

I can almost stand the pain (ok maybe not really anymore, as I go into my ninth month of it) but I fear I won’t be able to survive the blacking out, neurological deficits, unable to think/walk/talk very well thing that also happens…

I had another stroke-like/complex type/ migraine series of symptoms on Friday the 4th. Was blacking out, severe tunnel vision, crackling in head, pain, can’t think of words or names, can’t make sense of anything, hyper aware of my gait when I walk, can feel bottoms of my feet and its like I am a weird walking stick figure, have to hold the rails when I walk up or down stairs, hearing is somewhat distorted, and right side head feels miserable pain and also refers pain around to left side.

(4 hours later I was fine. Still had head pain but neuro symptoms abated and no lasting effects, except perhaps exhaustion and irritability! I didn’t take medications but walked to increase adrenaline and oxygen to keep from blacking out. Drank some glasses of water and ate meat and sat still in a quiet dark room.)

What preceded the episode? (which feels like a brain collapse or blow-out), I don’t know. Had had three good days. Hormones=it was a week before my period would start. Had been having a lot of left side face twitching and left leg and lumps twitching.
I had been sitting down for a few hours.
I had been drinking a caffeinated beverage and chewing ice.
These sound like coincidence but sitting down and eating often triggered short episodes of blacking out/tunnel vision for past 6 years. (This was back before I had migraines or any head pain at all. Sometime when I ate dinner I would get blacking out dizzy, which doesn’t happen if I stand up to eat.)

What to do?

I think I need more imaging of that right side.
MRI with contrast?
Splice MRI of that section only?
PET scan?
CT with contrast?

Can we put me on iv antibiotics or antivirals?

Can we put me on oxygen plus iv compazine?

Something? Anything? This is very Unlive-able.
I have been in survival mode since November 2008. So Frustrated.

Vein, Bone, or Nerve

6-5-11

Ok, so Right Side Head- it's either vein, bone, or nerve, right?
(or cartilage or artery or gray matter)

What are the best tests for imaging each?
Vein/artery-?
Bone/cartilage-?
Nerve-?

It feels like I was kicked in the side of the head by a hoofed animal, and like something is seriously Constricted into a tight ball.
Like part of my brain made a fist.
That something that should be –flattened out like paper,
Has been crushed into a ball,
Or folded into origami.

Something inside the right side of my head has made a fist
And so all my cranial nerves are twangled
And go constantly crazy
And the fluids and pressure build up

1. what is it?
2. how to smooth it out?

Things are pressing on each other that should not be.

Other choices are-
Bacteria/infection
Virus
Parasite

Right?
So can we just treat for this?
Could it be Lyme or co infection, herpes virus, or parasite picked up in Africa or via ticks or mosquitoes in US?

Tempted to do self surgery but who would hold the mirror?

Really, ready to take a serrated grapefruit spoon and scoop out that part of head, and also lumps in lower left leg. It is like these parts are now rotten, painful, disruptive, and preventing the rest of me from moving on with my life.
Would do about anything to not be in constant pain all day and night.

what the dreams seem to say

And by dreams, I mainly mean nightmares, but they have similar themes and images and this is what I can see:

It is something masquerading as something else.

It is not what it appears.

It is very old/ancient.

It threatens the very depth and core of me, body and identity.

It seems to be from Africa. (Though now I also see how my childhood, how old Virginia was like Africa in some ways, the jungle, and black-skinned people who had not so long before been in Africa, my totem lion, my time in the woods, apartheid, isolation, the food chain...)

It has that voodoo aspect.

That masquerade aspect.

That jack-in-the-box who has left its box aspect.

It wants in.

It waits in doorways.

It terrifies me.

It gives me night terrors, wakes me drenched in sweat, and makes my days like a bad strange dream.

My Great Day Goes Wrong

June 3, 2011

Ok, except for all day right sided head pain, left knee pain, and a night terror, I have been having Three Very Wonderful Days, and enjoying them to the fullest. Eating, walking, writing, and today the ladies came for lunch and to play cards and I was having a great time.

But there was the dread night terror last night which because of the auditory aspect, the loud crack sound waking me up, makes me think it did originate in the right side of my head, right temporal lobe (hey, maybe there is a jack in the box in the right side of my head? Is there a treatment for Jack-In-The Box-Head?!) but even so it was a nice day, until late afternoon, after I had been sitting a few hours and playing cards, I began to feel an increase in pressure and pain on the right side, and it did begin to shoot pain around the back of my head to the left side and the crackling sound was growing louder…and gland in right side of my neck seemed swollen, and pressure behind right ear)

'Migraine?' I wondered. 'But why? Seizure? But do seizures present with head pain?'

I have this right side issue everyday, and when we ladies got up and walked outside to say goodbye and my mate joined us, I could tell how bad I was getting and quickly.

It was hard for me to keep from blacking out.
As I stood there and talked to my mate and friends, it was like I was in a dream, and they were very far away, and I knew that I knew them but I was somewhat removed and couldnt quite place them, and I was dizzy and disconnected, distracted, and there is like a roar and a rush in my head, a crackle, and I fight to stay connected, and in the conversation, but my depth perception is off and I have tunnel vision and everything is strange.

Then my friends leave and I am pretty sure I will just black-out, it’s like my brain can't get oxygen. I can’t stay conscious, and then I feel anxious, like heart is fluttery a little, and its almost like I cannot breathe exactly right, but I make myself breathe deeply and slowly,

But the R side head pressure is so intense, crackling is intense, and I feel slightly dizzy and off kilter, I am going to black-out and fall down. So much pressure in right side of head, pressured but hollow.

I don’t know what to do. Consider Imitrex or Klonopin but afraid to take anything that might make me more drowsy or tired as I am already almost blacking out, and I think what I really need more of is adrenaline.

I opt to walk and I am afraid I will pass out and or fall and hit my head but if I don’t keep moving I really do feel I will pass out, so my mate walks with me, and it helps a little.

This is a primary medicine for me, to walk, to pump blood through me, to force self to stay awake.

The legs are the pump for the heart. Stay active as you can! Pump life into your body, and your life dreams.

I am very aware of things though, like my feet touching the ground, and my gait. I feel like a walking stick figure. A weird kind of self consciousness. I catch my own arm and hand out of corner of my eye and am like, 'What is that?' Alarmed feeling.

Have to hold the rails in the house to keep from falling up or down the stairs.

Drink two glasses of water, eat some meat, sit still and then feel better.

I think there is something very wrong in my right temporal lobe, maybe my amygdala.
And I think they need to be further imaged. And fixed.

It feels like something crumpled in there. Something that was smooth paper has been forced into origami.

And yeah, head my hurts. There is pain.

I think, ‘you know what? This is the thing that will kill me-,
If they cant fix it.’


3 hours later: and I start feeling better. Head still hurts but not quite so neurologically bizarre, and not totally blacking out.
Am I going to live through this? Outlast this?
And if so, how?

4 hours later: Thank heavens. I am neurologically “normal” again. Crackling right side-headed pain, but that is all.

Life as a Spinning Ride

I used to love being spun.

As child I craved any ride that went around in circles.
Not heights, and not drops, but spinning.

My sister loved to swing.

I loved to spin.

But since my head went wrong I can spin no more.

Last summer, August, for my birthday, my mate and my best friend and I went to the fair and she and I rode two spinning rides and laughed so hard we cried. Then I didn’t feel so well, and knew that that, my first ride in years, had also been my last ride for awhile.


So my mate P and I went to Cape Cod last week for a quick vacation in between his old job and new job.

The problem with vacations is that we always have to take me.

Leading up to it, I was not well enough to go, and I said, “Ok Honey, I will go with you on this holiday if when we go out on the whale watching boat you promise to chop my legs off and throw me into the sea.”

And he humored me but I could tell that that was going to really ruin his holiday if he had to do that. And, as he said, “Thanks, I will go on vacation but end up in jail. Very relaxing.”

So, we did get to go and I was feeling fairly decent and I loved being on the boat. It was a calm day but still the boat went up and down and one had to hold on to the rails and walk with sea legs, but it was wonderful, the sea so alive, like a horse, like a carousel ride, and filled with whales!

We both got migraine eyes from the light and the pitching and maybe the wind and sun and cold all at once, staring long at horizons and waves, looking for fin whales and humpbacks, but still we loved our time out there and want to go back.

The earth continues to spin.

I continue to hold on.


(photo NJ Fair August 2010)

Nightmare, Scarecrow

June 3, 2011

The worst Nightmare last night.

I heard a noise, loud, like a rock hitting a window. So I got up from bed and went downstairs. The house was opposite, the front deck on the south side, and I went to that door, and there sitting on the railing was that guy from Jack in The Box.
Terrifying.
He wasn’t facing me.
He was lanky and looking away, his body turned toward me but his face turned away. A scarecrow who had all the time in the world, but wanted to come in.

He was just jeans and a blue flannel shirt, and a giant white round ball of a head.
So human, but not human.

My heart was pounding. I woke up Terrified.
And not wanting to be alone, ever, especially at night.

P lay beside me sleeping, a great comfort.


Why do I have nightmares? I have had them my whole life. It is hard enough to sleep and then sometimes sleep brings terrors.
As does waking life.


The thing that is attacking me never lets me see its face, I never learn its real name.

(photo, hours long traffic jam, stuck in the Bronx tunnel)

Session #10 Olympia

June 2, 2011

A miracle. As always.
No place I want to be more than on that table.
She bravely stands in between me and my pain.
Intercepts it. Interrupts it.

I say, “I feel like there is a knife in my head and every time I turn my head its cutting me.”

And she motions to the table and says, “ Lets get the knife out of there.”

We have a lovely lively easy chat as usual and then at some point I descend, or ascend, into a silent place.

At one point I saw jellyfish.
It was like my head was a jellyfish, my brain the jelly body, and my body was made of tentacles of nerves.

At another point I saw a sun radiating from the center of my forehead.

She does things to me that I would not allow anyone else to do, wouldn’t trust them to do. I swear she reaches her hands inside my skull, and into the intersections of my neck, and moves my bones, and lifts me off the table by my tendons and ligaments-but it’s miraculous, Transformative.

She is so Competent.
I give myself over to the treatment.

There is actually less pain these days during the treatments, less pain than when we began, I feel more warmed up, expansive.

And I tell you, now it is hours later and I still feel quite good. I can see better out of my right eye. I can lift my right cheek to smile. Actually I can move the right side of my face in ways I have not been able to in months, in years.

And I have a feeling in me—I would call it—Happiness.