Dr. Raab Visit #6

Got up early this morning and went to Dr. Ponti's where she drew more blood for hormone tests. Then to the neurologist Dr. Raab for follow-up. We made a plan that this next cycle I would start the Imitrex sooner, start the Klonopin sooner, and if I was queasy and nauseous to take the Compazine twenty minutes before the ibuprofen or Imitrex, not to exceed one Compazine every eight hours.

Still awaiting porphyria tests and Dr. Raab concedes she is as puzzled as I am about the non-stop right-sided head pain, and its relation to right back/shoulder and upper right abdominal pain. She says if nothing else, I should probably start the nortryptalline soon to try to combat that right-sided head pain.

She wonders if my body pain might be from Lyme but says one has to be careful with what labs you use as "there is a lot of quackery in the diagnosis and treatment of Lyme." I tell her I will send her the results when they come in.

My bp was 122/86.

At least it is good to have a plan. It is as if I am going on a solo mountain climbing expedition in a remote place, and we know the dates, and that I have no choice but to go, but at least this time I am being sent with new gear, "try this set of ropes, these boots, this pick-axe."

And then I will see her again in three weeks.

Meanwhile, I feel quite good today. My beloved and I had a quick picnic at the park on the Navesink River and now he has left to catch a plane to St. Louis for the first day of his new job.

The sunshine is delightful and I find myself compelled to get more flowers for the garden. Something ate all of the pansies and petunias. The Wild Blue Yonder rose we planted last year for Mother's Day is blooming and the foxglove is high and the hollyhocks and the beebalm have come back.

There is no money for flowers but I still cannot stop myself so I dig out an "emergency twenty" from its hiding place and forbid myself to spend more than that. I go to Sickles and amusingly, the Exact Total is $20.00. Exactly.

But I am richer than that. I now have a fig, a teddybear sunflower, an Ikarus sunflower, and a six pack of orange-red marigolds to greet me in the mornings.

Identity

A break from the blog is in order. On sick days I am too incapacitated to think or write and I still roam the earth as if I were Munch's actual Scream.

On good days I leap into life. In early May I flew west to WA and communed with my family and friends. I walked the beaches in mist and rain, played cards, celebrated Mothers' Day, hosted off- season egg hunts, browsed used bookstores, went to the Idiom Theater, the Bellingham Circus Guild, saw my sister at her tribal dance Hafla, and saw my west coast doctors. There were no pain free days, but there were Pleasant Distractions.

And then to the hospital, but what can you do?

Then I managed to fly East and reunite with my mate and other mammals and to see my east coast doctors. This past week I drove us 375 miles to Cape Cod and we stayed in Provincetown and saw fin whales and humpbacks and waves filled with seals. Then my mate drove us on to Boston and we walked the cobbled brick paths and visited the Gardener Museum.

So on bad days I am too sick too blog, and on good days I am too desperately caught up in trying to catch up with living on this beautiful earth. Or I have quiet times in which I wonder how I got here, how I got so sick, and who this makes me. Who are we without our goals and dreams? Who are we without our jobs and pastimes? Who are we when the body breaks over and over again, and the limpet seems to leak from its shell and yet still lives?

I plan to set new goals as best as I can. Right now they are still dominated by the desperate desire to get a diagnosis and hopefully a plan for treatment before my poor head explodes once and for all, and before my leg requires a cane or wheelchair. But I also wish to get back to my writing desk and to tell some stories and create some poems. And this summer I have a house to pack and a household to relocate to Texas. Imagine that.

So mainly what I know is that identity is a shifting cloud. Or maybe it is the entire sky. What I have learned in recent years is to identify with the bulb, and not the flower.

TTFN (TaTa For Now...)

Recurrent Dreams of Amy

Is she symbol? Or do I need to call her?

In the past five months I have had 5 dreams about a childhood friend who lives in Maryland. We were best friends in the sixth grade and for a few years after that until our lives radically diverged when she became a Mom at the age of 16 and I headed to college prep school.

In some ways her life was likely my life, (one of the many fates I escaped), if my folks had not moved us out of rural Maryland and out to Colorado where there was a bit more for teenagers to do than drink and drive around in cars and get pregnant.

In Colorado we hiked up red hills under blue skies. We read a lot of books. There seemed to be more opportunities for females.

Amy's and my paths had split in junior high anyway when she became slightly more obsessed with boys and I became more interested in words. She still wanted to attend church but that was for Sundays. I wanted to shun church but to lie awake any night discussing the Bible and the various meanings of life that might be possible.

I recall the night our lives went different directions, or at least the night I realized it. Four of us teen girls had come back from a day at the ocean, and we were all sunburned and sandy and spent, and we lay down together width wise on the bed, our feet sticking off, and they all slept, and I lay there in a Noxzema haze, thinking about the day and the future. Amy had stayed awake with me as long as she could, and finally sweetly and drowsily asked if we could talk more in the morning.

I am not trying to say either of us was wrong or right. In many ways I do think she was the better adapted person, and you will not ever find a sweeter or more kind- hearted person.

Does she keep popping into my dreams because she needs to hear from an old friend?
Or is she symbolic for me? Is it that I kept intending to go and see her while I was on the East Coast but my illness and other people's deaths kept me from making the trip, and now we are about to leave this coast? Are my dreams telling me I have unfinished business?

Awesome Hand-outs from My Mom

My Mother is a wealth of kindness and information. She had recently given me many collected articles and hand-outs which talk about using things like riboflavin to alleviate migraines. I now have an extensive Head Pain Library and even so these articles she has collected have some very new and pertinent information. To consider: high dose riboflavin, feverfew, progesterone.


I have learned that in women estrogen dominance can be a big factor in migraines.
Estrogen causes the brain to retain fluid, depletes the body of magnesium, and causes nocturnal spikes in cortisol.

There is an article on Chinese Medicine theories that migraines are caused by 'liver fire."

Also relieved that more research is being done on head pain. Fascinated by theories on cortical spreading depression, and want to learn more about the trigeminal nerves and the trigeminal nucleus.

Really need to elaborate here but am so tired of the topic. When will my head be well enough to really read and understand all that I need to? It is so hard to plow a field with a broken, exhausted organ!

visit to Dr. Streit Lyme Disease Specialist May 24, 2011

May 24, 2011 Visit to Dr Streit in Howell, NJ

Today it was as if I was in a dream. My head hurt a little. So did my knee. I could not sleep last night. Today the weather was very warm and jungly and lovely and I wore a skirt for the first time this year.

I drove to Howell NJ and arrived at the doctor’s office, just past a K Mart and a Wa-wa, 40 minutes early. A strange brown building on the side of a busy road.

I began asking myself, “A doctor I found on the internet? On the Internet!? What am I doing? What was I thinking? Why am I here? The internet? Really?”

I considered not going in.

But I went in thinking I could always leave, or opt out of more bloodwork, or something, anything.

But within thirty seconds of entering the pleasantly well lit building I was at ease. Well more than that, there was a strange and glowing Twilight Zone feeling, an aura about the place. It was nothing about the décor. I mean it was a traditional doctor’s office in every sense of it, but there was an atmosphere that made me feel I was both in the right place and in a dream.

On the wall were many awards the doctor had received, including Patient’s Choice Awards for 2008 and 2010. The women at the front desk were exceedingly pleasant.

Strangely I felt like I was with my people and in the company of peers. The patient ahead of me was having disability forms filled out. I could feel how tired she was, though she looked normal. She was lean and young and well groomed.

It was so strange. The waiting room was filled with people almost exactly like me, woman about my age who looked sort of young and fit but you could feel in all of us this something not right.

Though it was as if not long ago you would have found us all out on a hike together, gardening, wandering through the woods with our dogs.

It was like I had found my people. My sick people, but my people still.

In the past three years, I have so often either been in an ER with people who have been in accidents or who are giving birth, or in offices like the cardiologist or the first and second neurologist where I am thirty or forty years younger than everyone else sitting around me.

I filled out paperwork. I read magazines. I was led to a small but pleasant exam room.

Soon Dr Streit appeared. He looked at my recent labs, asked me a few questions, listened as I described my odyssey, and I could hear myself, as if I were someone other than myself, talking about me…

He took my bp which was a very normal 120/80.
He examined me as a typical MD might. Then he did some muscle testing, which surprised me but which was fine.

And then he said that he was quite sure I had advanced Lyme disease, from what he had seen and heard.

And he was very interested in the head pains that would wake me up, and the night sweats, and how I would wake in pain and terror. “What did others make of that?” he asked me. “ No one has had any idea,” I said. “They just give me painkillers that strangely don’t seem to work.”

He drew my blood expertly and kindly, and I said I knew the other tests I had had were considered unreliable, but were these tests he was doing tests he felt confident in, that they would rule in or out Lyme and various coinfections?

Yes he said. And I said Good and described the strange voodoo aspect and the excruciating pain and that if I didn’t have an infectious disease from North America that I wondered if I had picked something up in Africa in 2008.

And that is when he told me that he was quite sure I had Lyme as I was a classic case, and that he also suspected I had babesia, another tickborne infection, and that it is like malaria and that they treat it with anti malarial drugs.

Intriguing.

So my blood is being sent to California. The results will be back in 3-4 weeks.


I told Dr. Streit I was most grateful for his help and asked him how he ended up a Lyme specialist. He said he had always been interested in medicine and helping people, and about twenty years ago he began to see many mystery patients, “exactly like you”, he said. “Very very ill but tests wouldn’t show anything”, and so he began doing research.

I told him how grateful I was to all the women at the front desk who had helped me on the phone and in person. “Yes, well they were all once Lyme sufferers too.”

It was such an oasis of kindness. So much kindness there.

I left there feeling strange and dreamy.

I drove to where I could turn around and was compelled to go into a TJ Maxx, really, compelled, which is uncharacteristic of me for the past two to three years when I only do what is absolutely necessary and always choose the shortest most direct path between necessary points.

I walked right into TJ Maxx and bought a pink sunhat.

This reminds of how earlier this year when I had my session with Olympia, I then went and bought some party shirts.

Then I went and got an iced tea and a salted caramel square.

It was a very Alice in Wonderland sort of day.

Dr. Ponti May 23, 2011

Good to see Dr. Ponti again. She always asks in a pleasant voice, "What can I do for you today?"

The skin lesion results came back benign and for that I give thanks.

My bp was also normal at 125/80.

I update her on my Saga and ask if it would make sense to either take steroids or to treat me with hormones during the most critical time of my month, which is a few days before period, during period, and the days as period is ending.

She does not think steroids are necessarily the best route to go and asks if anyone has tested my hormones. I say No, that everyone has been afraid to touch me in that regard since synthetic hormones landed me in the ER November 2008. I was advised to not ever take them again. But now I am wondering about trying progesterone, especially since reading many more articles on this topic. (Thanks Mom!)

Dr. Ponti proposes we test my hormone levels for the next month. Ovulation, luteal phase, follicular phase, menstruation. One fasting blood draw a week for the next four weeks.

So I did a little research to discover that progesterone is highest at ovulation and during the luteal phase, which is just after ovulation.

The follicular phase is from start of menstruation to ovulation and this is when estrogen is building and is at its highest.

Then just before the period is when both progesterone and estrogen drop.

Do I have that right?

All I know is that it seems hormones utterly wreak havoc on my head.


The porphyria test results are not back yet. But Dr. Ponti is pleased to be in touch with Dr. Raab from whom she has received thorough consultation notes.

I feel I am in good hands. I have Actual Doctors. I can focus a bit more on being the patient and somewhat let up on having to use my internet medical degree. My poor mind is so taxed and exhausted. Three nonstop years of trying to find an answer, day and night.

plane ride to NJ

So the Klonopin gave me a few hours sleep. At 7:45 am I am pretty much in agony and enraged by my pain. I cannot live every one of my days in a prison of such pain.

I decide to take another Imitrex and manage to make the trip to the airport. Baby steps I always tell myself. I break things down into hours. Or into minutes. Just get through this part...I tell myself.

My parents gave me a cheery send off and my sister Krystal and the kids arrived like sunshine wearing beach gear, shorts, sundresses, flipflops, and drove me to the airport in Seattle before they headed to Alki Beach for a day of fun in the sun.

I had a great aisle seat near the front of the plane and was able to stretch my left leg and knee often. Fatigue and drugs led me to take a quick blacked-out nap and I am not even sure I didn't lean on my neighbor at one point, though she was too polite to say anything. I just remember feeling like a long necked ostrich with a bobble head.

Towards the end of the flight, the well watered man (George) to my left across the aisle made effortless small talk for the remainder of our ride. At one point I did tell him I had been having disabling head pain and had not been working etc. I told him I was about to see a Lyme Disease specialist and he told me a fascinating story how his brother Robert, who was also his best friend, had been gravely ill for several years. No one could figure out what was wrong with him, and even his wife would call George and say that Robert was not right, and she didn't know what to do.

Finally, after seeing many doctors and not getting any answers, he did a lot of internet research and found a Lyme specialist, had new tests run, particularly a lumbar puncture, and indeed, he was very ill with Lyme.

George was not certain exactly what Robert had done for treatment but he did say that his brother was almost entirely back to his old life and health. He gave me Robert's phone number and encouraged me to call him.

ER in Bellingham, dilaudid and compazine

5-17-11 to 5-18-11

After days of Imitrex and pain and agony, I went to bed and awakened an hour later so sick and queasy and hot and miserable I could not think of what to do. I was too nauseaus to swallow any more pills. My migraine plan was not working. I was desperate for sleep.

I thought of my epitaph:
She was here for a bit,
and then she was gone.

I could not think of what to do. I could not sleep. Could not eat. Could not swallow any more medicine. The pain in my upper right side head felt like it might blow my upper teeth out of my head.

My pain was really only a 6 or 7 and not the 11 I had experienced so often but I decided to go to the ER, to see if I could get help before I became an 11, or a 111, because I could tell this was not going to turn around. I was not going to get better on my own, was not going to be able to fly back to NJ in two days, was not going to enjoy any of my moments of life.

I borrowed my parent's car. It was four am and they were asleep. Outside was the biggest lowest to the earth full moon I have about ever seen. I drove myself to the ER and was lucky to hit a lull. There was one man there who had metal in his eye.

My bp was already at 148/112. I told them, "It's like I am on Day Million of a Migraine."

"My nerves have turned to barbed wire."

Pam does the intake. I sit in a quiet waiting room a bit and then am led to nice quiet dark room. Trish or Tricia is my nurse. Dr. Mongue comes in and asks what works for me and I say sadly so far Nothing. He asks if I have been imaged when I am having this pain and I say Yes two CT scans and an MRI.

He quickly decides he will give me an iv of fluids, compazine, and dilaudid and tells me I will not be able to drive.

They get the iv going. I ask for only a half dose of dilaudid to start since I don't think I have ever had it and they say it is so strong. I call my friend M, the lark, to see if he can visit me and bring me an iced tea because I am hugely thirsty and very exhausted and want to see a friend who is awake so early in the morning.

Soon, the drugs kick in and I feel a little better though it is so hard for me to hold still and that with the noise and lights have led me to avoid ER's, though today I am treated so kindly in a dimmed space. But I get shivering cold from the iv fluids and so restless I can hardly stay hooked to the iv, though I know it is helping.

My friend brings the tea and it is good to see him and the tea and I get the most incredible cottonmouth, something else I had never experienced, like your mouth turns to dry fabric, and its almost like you cannot breathe it is so dry.

And the meds have helped some and I just want to leave. The doc says I can go when I want to but first he asks if my pain is gone and I say its better and he says let me help you and tells me to take the other half of the dilaudid, which i do, and then Wow I see why I cannot drive as my eyelids close. Like heavy sideways curtains.

They try to decide what discharge drugs to give me and since I am allergic to percocet and since fioricet now does nothing for me, they decide to give me prescriptions for dilaudid and compazine.

I am grateful for the help. My friend drives me to my parent's condo. My eyelids are still closed. I fall asleep from 8 am to 11 am, wake up, and then go back to sleep until 12:30.

That day I get the rx filled and the pharmacist asks if I know what to expect and I say I am hoping it will work and he says, "it is our heavy-hitter."
"No driving, right?" I say.
"No driving."

So as the day continues my head gets worse and there is pain and crackling and pressure. I take benadryl. I take half a dilaudid. I take another half. It is like it makes my head worse. I take compazine. I read online that via an iv it is good for Status Migraine. Maybe I need to try that.

I take the compazine. It does nothing.

Why does an iv infusion work but pills either do nothing or actually seem to make me worse? Isn't there a clue here?

At 1 am I am nauseaus, head pain is severe, I wonder if I should start steroids? Do I go back to the ER for iv drugs? I cannot fly like this. I am nearly dead from the thing. I go back to bed with a hotpack on my head.

At 2 am, I still cannot sleep. The sound of icecubes shifting in the glass startles me.

How am I going to outlast this? How on earth am I supposed to survive this?

I take a Klonopin. This buys me 3-4 hours of sleep.

Dr. Laura Shelton

Dr. Laura has known me for twenty years. She helped me with a female healing crisis in my early twenties, saving my life essentially. When I was better, I went to work for her, and spent five plus years working at the Natural Health Clinic. The woman I hired to take my place when I moved on is still there and also a friend.

That said, I have not seen Laura as a patient in recent years as she is also booked far in advance and for some reason my times in WA have not worked with her schedule. Not meant to be, but this time, it was meant to be.

She is such an excellent Listener, and filled with ideas, wisdom, knowledge, and experience.

She had an intern there, a student from Bastyr named Megan, so it was as if I had two doctors. The more the merrier, I can use all the help I can get.

I tell her I am living with chronic pain, menstrual migraines began in 2007, 2008 I end up in ER and never get better, 2010 the right side of my head blows out like a volcano and leaves me very disabled. In April 2011 I ended up on steroids which save my life. I am seeking her guidance on hormones, nerve healing, pain management, etc.

The migraine arrived in Nov 2008 and has never really left.
Sometimes it just hides behind a piece of furniture.

Dr. Laura decides she will treat simultaneously for seizure and migraine.

She gets me scheduled with Dr. Paul DeJong for a Myer's cocktail, an iv infusion of nutrients. (Later I end up at ER and dont get this but I hesitate anyway as the IV contains B12 which I seem to have an adverse reaction to, but maybe in the future I can get an iv of magnesium and Vita C?)

She wants me to start MigraLeaf which contains magnesium, feverfew, and riboflavin. Wants me to increase my magnesium and begin Vitamin E. Also take B vitamins and fish oil. To begin betaine at meals to help me better absorb iron and vitamin D.

Also to take a one time homeopathic dose. (They choose Belladonna for me, 1M.)

She says Yes Test for Lyme again. She gives me a lab slip for a food allergy test and T3 test (also not done as I end up at ER but I will get done next time I am in town.)

She says cut out sugar from my diet and eat protein meals often.

She also wants me to start manganese and COQ10.

I leave there feeling loved and helped. Hopeful.

Craniosacral with Diane

Last year I saw most esteemed craniosacral therapist Tim Hutton in Bellingham WA for some overall general help with my left leg and knee and overall chronic pain. We are old friends and coworkers and while he has no dearth of scientific knowledge, the magic in his practice is him. He has a magical healing way. And we are both canaries on a crowded noisy planet. I can always speak freely with him and he understands, and what I recall from last year's session is that we traced some things back to my liver, and also that a certain white snake reappeared in the room, but that is a story for another day.

Tim is booked out about two years and the only reason I got in last year was because my Mom had an appointment she was not going to use and gave me her space. I would not have thought of using craniosacral too much for my head and body pain, because the migraines are so much of a critical emergency nature and I think of craniosacral as medicine for gentler times. I know craniosacral is good for help with pain, but my pain is of the sort of woman-on-fire type that doesn't allow me to hold still and get help. I would have to say, "Excuse me, but can you help me as I am leaping off the bridge or balcony? Can you treat me mid flight?"

When I saw Dr. Steinberg he was glad I was getting myofascial treatment and also recommended some craniosacral work, and as luck, blessed luck would have it, the timing was great as my friend Diane had just completed her second workshop in craniosacral training and was eager to work on people.

So I got on her borrowed massage table in the middle of her open air kitchen/living room and she did a session for me while the kids watched movies upstairs. I was in a blessed migraine free week but had been having bad right sided head pain and crackling. (and why do i think that is not also a migraine? i am so confused by all of this.)

So I figured that perhaps Diane would just sit with me for a few minutes and practice listening. But I think I was on her table for over an hour, and it was indeed deeply therapeutic. I think she has a natural gift for this healing art, and also that my right side head really does want to be worked on, it wants attention.

She spent almost all of the session with her hand near my right sided skull and temple and I felt enormous heat in there, that sort of cloud of prickling, and my head wanted to move towards her hand, wait, not my head, but the thing inside my head, wanted to move towards her hand, like there were magnets involved. I get this strange cilia like image often, like a cactus is in my head, and the hairs are also magnetized and crackling. This reached for her hand, it wanted to move towards her hand, and the sensation was calming for me.

I also had a funny and strange image that to my direct left she had a helper. The helper was standing at my waist, facing me, a shorter creature and wrapped like a mummy, but a cheerful character, and obviously from outer space.

No, I was not asleep. But grateful for the calm that was engendered in me.
And for Diane's gift of her time, and her generosity.

Blessed are the healers.
And blessed are all people who take the time and care to be in touch with their healing natures and to help others. I am most grateful. And I wonder when the time will come when I can get back, get forward, to that sort of work.

(photo of tulips in Diane's garden)

Status Migrainous, May 18, 2011

May 18, 2011

This post is preceded by some very nice yesterdays, the 14th when Diane did some very therapeutic craniosacral work on me, and a good appointment with Dr. Laura Shelton on the 17th.

But then there were days of pain as my period, the assassin, broke down my cells with its axe, and bludgeoned me as it does for about ten days, every twenty-six days.

So then the ER. Then dilaudid and compazine.
Now just pain that never ends. Status migrainous.

Migraine Central

May 16th

Oh God I am Migraine Central.

It is as if I have become central headquarters for all the migraines in the world.

Simultanously, I want to scream,
cry, clutch head, fall down,
pace, sit still,
jump off balcony,
shoot self in head,
be really quiet, scream,
pray, beg, weep,
be really hot,
get cold fresh air,
take a hot bath,
be in the cold,
get in bed,
keep moving,
scream, scream, clutch head,
scream, scream,
fall down,
run.

One week with no migraine!

May 11, 2011

Good News!

What can I say but Whoohoo!

(I still have right-sided head pain but I made it to my village of Bellingham and have been living life to the fullest for many consecutive and joyous days!)

Dr. Steinberg, Trigeminal Neuralgia

May 10, 2011

Appointment with Dr. Mark Steinberg, the naturopath I have been seeing for the past few years. It was his theory in January that I might have trigeminal neuralgia, but as he said then, "I hope not." Now that it looks like I do have some sort of occipital and trigeminal neuralgia, he is helpful and not hopeless. He has many ideas. We plan to continue on a program of nerve healing and anti-inflammatory supplements.

He wants me to continue Vitamin D, magnesium, and B Complex, and to take as much fish oil as I can possibly tolerate.

He wants me to ask Dr. Hopper if I need iron shots to get my iron levels up.
Dr. Ponti had also proposed this as a possibility. For some reason I have no iron stores at all, and now doctors are telling me such severe anemia can cause head pain.

I am to see Dr. Yin for a consult but before I opt for injections, which we both know have a slight chance of backfiring on me, he wants me to continue with mechanical, skull moving treatments, the myofascial treatments with Olympia and also adding craniosacral with Tim Hutton or Michael Maskornick.

He wants me to decrease sugar in my diet as much as possible and keep protein levels high. Dr. Ponti also wants me to reduce sugar in my diet. It is true that I eat a bizarre amount of sugar but I swear it is like fuel, and I have a very complicated blood sugar balancing act that involves a carefully orchestrated circus of meat protein and sugar. Asking me to not eat sugar would be like asking a migrating hummingbird or monarch butterfly to not eat sugar. That said, I too would like to reduce some of the sugar in my diet, for instance, prior to four years ago I did not put it in my tea or coffee, so I would like to take it out again.

If I seem to still be dealing with a lot of overall body pain and inflammation he might propose a fast and healing diet.

For allergies I can use a saline solution.

He says, "Take care of yourself."

Dr. Hopper, Occipital Neuralgia

May 9, 2011

Appt with Dr. Hopper

My bp is 132/88. My pulse is 72.

For the migraines he proposes I start the Imitrex earlier in my cycle and take as much as I need, advises I take more, more often.

As for my daily/nightly never ending right-sided head pain, he proposes that I might have occipital neuralgia. He refers me to Dr. Way Yin to pursue further diagnosis and nerve blocks, injections into my head, as treatment. (I call and get on the waiting list, as Dr. Yin is booked until the end of June.)

I ask about trying pure oxygen for what seem to be cluster headaches and he says he will prescribe oxygen for me if I really want to try it. I decide to try it at a later date. Dr. Hopper has been my doctor for a very long time and I like him very much, but I don't seem to be able to help him understand how disabled my head is making me, has made me, how I have been forced underground...

Make –Up

For years it seemed my doctors could not understand how sick I was.
It was as if I could not convey it, and also everyone seemed to be duped, that somehow I looked ok, and so I must be generally ok.
So for this last year, when I go to the doctor I intentionally wear no make up at all.

This means my rosacea red cheeks meet the porphyria blue shadows under my eyes,
And all of it on a palette of slightly off color green skin with chartreuse highlights.

So I want the docs to see me like this.
And it seems to make a difference in how they see me.

But I don’t feel as good the rest of the day unless I cover and blend the skin together with cosmetics. And I wear the mask for other people really, because for years anyone who knew me would say, You look tired, and I would say, I am ok, its just my face.

Planned Parenthood

May 9, 2011

In a blessed window between migraines I flew to WA. Had a female check-up at Planned Parenthood where I was delighted to find my practitioner was Sylvia, the same wonderful charming no-nonsense woman with the British accent who used to do my paps twenty years ago. It's like having Margaret Mead be your doctor! Good news was that my bp was 118/82 and my results all came back normal. Particularly reassuring as this was my the first annual exam in three years, so consumed have I been with agonies, that normal maintenance appointments had all been postponed. (Now maybe before too long I can visit a dentist!) A girl can dream!

the rosary beads of my DNA

Right now someone in New York is examining the rosary beads of my DNA.
I can almost feel them doing it.

I also have this sense that perhaps they will find nothing, nothing they can name.
And that I will spend forever in the murky realm of the sea monsters.

Dreams I have not liked this week

I dreamed I was about to see a therapist but she was going to be a bit late because she had some german shepherds she had to put through the woodchipper

My first inclination had been to help her since she needed help but then I thought better of it as I really didn’t want to help someone do something I didn’t approve of. The dogs were dead. They had been hers and she felt responsible for them so for some reason she opted to kill them.

Then I thought well even though she would be late, I would wait for my session, but then I thought, what sort of therapy session am I going to have with a woman who just put her dead dogs through the woodchipper?

And so then I went to a courtroom and it was very packed but for some reason the judge kept asking me questions and I found it very hard to hear him. I also wasn’t sure why he kept speaking to me since there was a packed courtroom and a trial going on.

The nights before I dreamed a friend was mad at me, and then I walked downtown and rode on the shoulders of two giant men who were both over six foot five and I thought it wasn’t very safe to be that high up on their shoulders as they walked around.

I also dreamed that I was in the attic with my grandmother helping her pick out a new nightgown to wear even though we knew she was going to die soon.

I want some nice fun sweet dreams. These other dreams are just not at all pleasant.
But at least dreams mean I am sleeping.

Asking the brain

Last week I was lying awake in the dark, and as always I was trying to figure out what was wrong and how to fix it, how did this begin and how to go forward, and as always I asked my brain what do I do, what do you need? How can I help? What is wrong? And so forth.

This time I did more listening than talking.

Or rather, I should say that while I am usually met with a silence, a stunned silence, or a sad silence, or a confused and searching silence, this time the brain was showing me things.

It was telling me how hard it works, how we are in this together, how it doesn’t know what is wrong, meaning what is causing all the trouble, but it is always scanning and scouting, rebooting, reorganizing, trying to heal.

It told me how it works continuously and how much it does, how much it used to do effortlessly. And how its like a ship with many rooms, and rooms keep flooding and going off kilter and off line and the boat keeps getting rocked and so it has to reorganize again, and it doesn’t know where the storms are coming from. It’s like being a small wooden and bone boat in a vast stormy ocean.

And it told me one of the greatest challenges now is how it works to keep things separate, that it is really a huge job to keep information housed and alive in one space from running at the same time as other info, that it is like a hundred movies want to run simultaneously, like chaos, and that is very hard to orchestrate things so that they don’t happen all at once.

Which I guess would burst the whole bubble of being.

So it's like a zoo on a ship with hundreds of movie screening rooms all linked together in a secret cellular beehive way and it's trying to keep the wild animals in their separate habitats on a large and surprising sea with stars above and monsters below

The mind is a miracle. The brain is a miracle.

Sit down you’re rocking the boat.

What Remains

So after my Wed session #9 with Olympia and also the convergence of whatever else is helping me feel better, as soon as I feel better physically, an Incredible Rush of Emotions comes in~the Existential World.

There’s joy and jubilation and an incredible feeling like I have just been freed.

There is, “Is it real? Can it last?”

And there’s sort of shock-like OMG I have lost years of my life. It’s like I have just come out of a coma. It’s May? 2011? What?

Wasn’t I just 36? Or 37? Wasn’t it 2007? Wasn’t it summer?

There is also the wonder and the thrill, I am alive! Anything is possible!
I can do Anything! I can find a job! And I can create my reality again, at least a little.

And there is the underlying grief of things, like wow, my father died last August and I hardly got to grieve, I was too sick too grieve. And I miss my two grandmothers. And some friends who have passed on their way.

And there is guilt, almost abandonment, like there are still so many people suffering pain and I have just left them. At least for a moment. (Though I would never begrudge them doing whatever they must do to be freed.)

And there is panic. Like OMG how long do I have? An hour? A day? A week? A year? A decade? More?

And there’s meaning of life issues. What is the meaning of life?
Whom can I help?

You live differently if you have only one day, than you do if you have thirty years.

And there’s beautiful visions-like time with my family and friends, in gardens and at parties, flowers and pink cupcakes. And with my mate in our home, and I imagine my future writing room with the three little kittens and my Blue cat and my golden dog, and I am getting books written. I have so many many books inside of me.

And then there is Fatigue. Holy Cow this has been Exhausting.

And also Urgency which says, “Get Everything Done Now. You might have a good week at best.”

Guilt again. I feel like I have abandoned my family, my mate, my friends, my life, the earth, the world as I ended up taking up dreadful and prolonged residence in the kingdom of the ill.

And maybe one reason I want and need a diagnosis so badly is because it would absolve me, as if to say-all this pain and suffering, it is not your fault.

I think if my pain could abate, I could possibly even find god again.

Olympia Session 9

I arrive to find Olympia and her new beau Patrick visiting on the couch in the waiting room. I have not told you their story and the mysterious way I met Patrick but for now suffice it to say that I am so happy to see them both, and together, and I feel like a flower turning toward sunshine. Even on this rainy day. We speak lightly of pleasant things and I give her a thank you present of an organic cotton t-shirt with a peace sign spelled out in leaves.

She worked my head and worked my head. An hour of working my head. The roly poly strange stiff ball of my head. The shrunken head brought back to life. The ball of dough becoming me. She worked directly on that right sided area that has become so deadly. She suspects my cranial nerves are perpetually flared up so we work to calm them.

I am raised like marigolds out of a tomb of the winter earth.

She takes my pain in her hands and she works it, works it.

She takes my head in her hands and she works it, works it.

She takes my skull in her hands and puts it in her hands.

I turn myself over to her.

She takes the tendons and ligaments in my neck and she pulls at them, like stretching taffy, like a weaver at her loom, only my tendons and ligaments are her threads, her warp and weft.

She weaves me back together, and as she does she separates me from the pain.

She breaks its chokehold.

She interrupts its scream.

She gives Munch’s painting back to the museum.

Session 9 and I am getting my own identity back.
I am being sifted out from the pain.
I am being separated out from the pain.

When I leave her table, I feel eye-bright and nearly ready for anything.

Patrick has arrived with vegetable soup. He is waiting for her.

And I go to re- greet my life.

An Amazing Day (May 5th)

Today seems like a miracle. I have the least head pain I’ve had in two weeks.
But actually I think it is the least head pain I have had in eight months, since last September.

Eight months of severe head pain.
But today=no migraine at all! And the Right side head pain was practically not there.
There was still sensation there, a slight dull ache, but there was no monster screaming in my face at the top of its lungs.

I attribute this to Simply-a Miracle-
But also factors that could have helped/are helping=
1. I am as far away from my period as I can ever get
2. I totally quit Flonase which was giving me nosebleeds and who knows what else
3. Monday night combo of ibuprofen plus klonopin seemed to help me feel better when I awoke
4. confidence in my doctors
5. love and support of family and friends
6. having gotten porphyria test sent off
7. feeling well enough in other ways that I was able to start taking B vitamins and fish oil again
8. and last but not least, two Olympia sessions in six days and Olympia Session 9 which was yesterday (and deserves its own post)

Dr. Raab Visit #5

Today was a better day. Less pain, more possibility.

Yesterday I had taken ibuprofen in the afternoon and then at bedtime dug out my old expired Klonopin which I used to take for those strange seizures/spells/attacks I used to have. Took half of a .5 mg tablet and slept 7-8 hours. And then took my daily right sided head pain and went to Ocean to see Dr. Raab.

Her office is a calm refuge. I go there and I know she will hear me and try to help me. Here is the update I took her:

Good News=

1. Got porphyria test sent off. Will have results within a month.

2. Two weeks off Flonase nasal spray and nose bleeds have almost entirely stopped. (Had been on Flonase for one year. Worked wonderfully for allergies, but nose bleeds began late last summer. Will not ever take this drug again. Could this be a factor in what is wrong with right side head? Did I grow subpar blood vessels in head?

3. Tried Imitrex. Neither a miracle drug nor something that landed me in ER. Mild to moderate relief with not too many side effects.

4. The 10 day migraine was less “complex” than times in past. Severe Pain but very little aura, not so much vertigo, not as much nausea, and definitely not so much of the scary stroke- like symptoms with speech delay and searching for words/saying the wrong words.

Not as Good News=

Ten Days of Severe Head Pain/Migraine coinciding with period.
Day 7 considered throwing self off George Washington Bridge.
Day 9 wondered if I could hire someone to kill me quickly.

Day 11, migraine gone and now just back to severe Right Sided Head Pain. (chronic/ongoing since September 2010)

How is Right Side Head Pain connected to migraine? Same thing? Different?
Migraines date to 2007. Prior to that I practically never even really had headaches.

Trigeminal Neuralgia? Cluster Headache? Seems like those plus Intractable Migraine.

Progress Needed=

Are there any other ways to image that right side head? An MRA to look at blood vessels? The specific slice MRI the tech at Atlantic Diagnostics said they use to look for acoustic neuromas? Contrast enhanced CT scan?

I want to try pure oxygen. How do I get this?

Also, how about an antiepileptic? Maybe I should try Klonopin. May I get a new rx?

Here are symptoms= Severe Head pain. Also bottom of foot pain, chronic, can’t walk in mornings. Left knee pain, left lower leg pain/lumps. And Left Shoulder in Pain for 3+ weeks, feels like it will blow out. (It was right shoulder pain started in 2007 and is still in pain.) Sometimes upper right ab pain flares up.

How to make progress on diagnosis?
Have we ruled anything out?

And here is what happened today. She was wonderful as always. She wants to focus on trying to prevent the migraines that come with my female cycle.

She likes nortryptaline because she thinks I will respond well with a low dose and because it can help with myofascial pain.

But because I am still chicken to try the nortryptaline, due to those cardiac, suicide, and sun sensitivity side effects (and I don't tell her I am also evaluating it against the porphyria database and it ranks as a drug to only use as last resort, I don't mind if she thinks I am irrational but I don't want her to think I am totally pseudoscientific, since I am not actually diagnosed with porphyria.) Dr. Raab quickly and brilliantly says, "How about a compromise?"

And so she proposes we try this for the next month=use Klonopin premenstrually, starting about two days before, for about ten nights. (10 nights is a typical migraine nightmare time.) And supplement with the Imitrex.

If the Imitrex gives me hives, as it perhaps did the 4th time I took it (but I hope it was more coincidence and not caused by the med) then I can try the Maxalt that Dr. Ponti gave me a sample of.

I like this plan!

And my bp today was 124/84. That is about as good as it gets so I was very pleased.

Porphyria Testing Day

You would think I would feel exultant or exhilarated,
But I just feel Totally Exhausted.

And that was how I felt before I even left the house this morning.

I made sure to eat and drink well. Went to Dr. Ponti’s. The blood draw did not go well.
We got three lavender tubes of blood out of my left arm but then it clotted.
So she went to work on my right arm.

The pain of the needle in my right inner elbow was so severe I was transported right back to when I was 15 and I cried in the car on the way to the lab and told my mother, “I can’t take it anymore. This is the last blood draw.”

I recall later years having technicians bleed veins in my outer arms and even fingertips,
because I could not stand the trauma of my inner arms being bled anymore. I guess its scar tissue.

Well today I just told myself to grit my teeth through the pain. In five more minutes it would be over, but either from the pain or the blood loss, I suddenly got a wave of nausea and uncontrollable dizziness. I warned the doctor, and she took excellent quick action, got me lying down, a cold rag on my face, and then my feet over my head.
She kept me from entirely losing consciousness.

Only I cannot sustain having my head lowered as that hurts my head pain too much.
So back up with me.

And Bless Dr. Ponti. She brought me a tall cold glass of water. I drank it. We looked at each other and said to each other, “Let’s get through this.”

She went back into my left arm, got two more yellow vials of blood, she put it in a biohazard bag and sent me on my way.

She doesn’t think its porphyria, simply because it is so rare. But she says the possibility is interesting.

All I know is that I can’t take being sick and in pain anymore.

And that I am thankful for Dr. Ponti because a lesser doctor would have given up, would have quit, would have been scared off by me trying to black out. She simply took charge, waited the necessary time for me to recover, and went back to complete the task.

So then I was just in so much pain as the sort of stress pushed my head back over the edge but also that right arm shot pain back through my shoulder and to the head also. I took ibuprofen and ate and drank, hot chocolate and a salami sandwich standing up in the kitchen, trying to think of how much it would cost for someone to kill me quickly. The important part is that they are thorough and make it quick. So you don’t want to underpay someone.

I packaged up the blood in layers of biohazard bags, bubble wrap, paper towels, box within box, and I just prayed it would stay intact and make the journey.

Went to the Fed-Ex down in Eatontown where I had done a preemptive journey last week to make sure this would all go like clockwork. I walked in with the biohazard packaging they had given me, to have them tell me they could not accept it.

I thought oh my god I am not well enough to take it to NYC on the train or to drive up there. But they told me I could take it to Fed Ex headquarters, just a few miles away, so I did that, and a wonderful helpful woman sent my sample on its way, to arrive tomorrow morning by 10:30 am at Mt. Sinai Genetic Testing Labs.

So Mission Accomplished.

But it was a lousy day.

Tomorrow back to the neurologist.