A Me Update

Image from ibnlive.in.com

Image from ibnlive.in.com

“Solar Eclipse

Each morning
I wake invisible.

I make a needle
from a porcupine quill,
sew feet to legs,
lift spine onto my thighs.

I put on my rib and collarbone.

I pin an ear to my head,
hear the waxwing’s yellow cry.
I open my mouth for purple berries,
stick on periwinkle eyes.

I almost know what it is to be seen.

My throat enlarges from anger.
I make a hand to hold my pain.

My heart a hole the size of the sun’s eclipse.
I push through the dark circle’s
tattered edge of light.

All day I struggle with one hair after another
until the moon moves from the face of the sun
and there is a strange light
as though from a kerosene lamp in a cabin.

I pun on a dress,
a shawl over my shoulders.

My threads knotted and scissors gleaming.

Now I know I am seen.
I have a shadow.

I extend my arms,
dance and chant in the sun’s new light.

I put a hat and coat on my shadow,
another larger dress.
I put on more shawls and blouses and underskirts
until even the shadow has substance”
~ Diane Glancy

 

It’s been easy, in recent weeks, to forget for hours at a time, or even days, that beneath my skin lurk a host of bacteria. Lyme, bartonella, babesia and some other nameless beasts. They drill through the flesh and fluids of my interior. Many have been killed over these past two years as I have flooded my body with antibiotics, herbs and essential oils. But not all.

It’s the ones that remain which are so bothersome. Some have not been well targeted by any protocols I’ve yet undertaken. Others have cleverly changed form. They deconstruct parts of me and then rebuild themselves with pieces of my DNA, rendering themselves invisible to my immune system. They slough their cell walls and then slip into my own cells soundlessly, hidden from view. Hidden from drugs. Hidden from so many kinds of treatment.

These past weeks I haven’t thought much about all of these pesky invaders. Instead, I’ve tasted normal. I’ve known delights lost to me for so long I’d feared I’d never know a time for them again.

My body is stronger. My mind is working better. My immune function is the best it has been in years. So my docs asked if I felt ready for a round or two of more aggressive drug treatment before I went back to gentler, more natural methods of healing. Intuitively for me it was a yes – before I even got my bloods back. Yes. Ready. So, we began last week.

I’m lucky – I had the luxury of some free time before I need to be functioning well again for work. Weeks I had slated for writing time and a holiday before I gear up for my next retreats became the perfect opportunity for embarking on new treatment adventures. I knew this was right timing. It all seemed to fall so easily into place for me.

Except that I’d conveniently forgotten just how horrible such treatment adventures can be.

Oh.

My.

Goodness.

It started with vomiting and pain. My body did not like the drugs. Or what they were doing to me.

The misery ramped up as the bacteria within me began to die. Glands the size of golf balls. Night sweats. Fevers. Chills. Seizures. A tongue that rolled around in my head unable to grasp at words, or to make much more sense than a drunk. A brain on holiday. Night and day merged, hours merged. It got messy. Really messy.

Then there was the pain.

I’d forgotten about the pain, and how bad it can be. Body pain. Nerve pain. Brain pain. How did I ever live with this pain before? This loss of function? This rendering of myself into a million screaming and incoherent fragments?

There have been other delights too. Loss of vision. Confusion. Immense fatigue. The kind of fatigue where it takes all you have to lift your head from the bed, or to track your eyes across a room. Indignities such as loss of bladder control. Streaming eyes and nose. Rashes and shakes and parts of me misbehaving, no matter what my brain was bidding that body part to do.

Everything that had become easy was suddenly hard again.

But I know it’s not for long.

I know it’s just for this short window of time, after which this current treatment will end and I’ll step back, regroup and allow my body time for healing and rehabilitation.

There’s not one pill that will fix this. Not one magic bullet. I have thirty years of complex bacterial infection. On top of that, all of the chaos and damage those infections have caused to my brain, my organs, my central nervous system and hormonal systems.

What I’m doing to heal my lyme and co-infections is working. My results prove that. My daily life proves that. But it has taken a lot of gritted jaw to get through this last round of drugs and I have a few more weeks to go. Although I pray I am through the worst of it now.

I’ll tell myself that anyway. Just like I always do…

This is what life is. It’s what I’ve learned over time. Life is ups and downs. Mysteries. Breakthroughs. Dead ends. Wrong turns. Wrong turns that lead to the right places. Breathe in, breathe out. Place one foot in front of the other. Rest. Keep going. Keep growing.

In the ten days I have been on this new treatment three lymies (people with late stage lyme disease) I know have taken their lives. Too much pain, too much damage, not enough support, no access to adequate doctors or treatment, no light at the end of the tunnel, and they each reached the end of their respective ropes.

I understand that space. There have been times over the years – even the last two – when I have sat on that same bench, and had that same conversation with myself and those closest to me.

It puts my own illness into perspective, my treatment into perspective, my recovery into perspective.

I won’t do myself or this illness the disrespect of rendering the lyme journey down into a handful of trite new age slogans. Loving my disease, making peace with myself, loving myself – they’re all noble and worthwhile sentiments, and I honestly do my best. But how many people who got hit by a bus or a dose of MRSA from a hospital stay, or a life-threatening bout of meningococcal disease get those flags waved at them? Who of them would be expected to be healed by the simple waving of a crystal, the chanting of an affirmation or a thorough investigation of their past lives?

For me, a wholistic approach to healing means using intelligent diagnosis and solutions – a range of traditional and alternative treatments. Science. Ancient and modern. Spiritual practice. Drugs. Energy medicine. Herbs. Oils. Intuition. Food as medicine. Doctors and practitioners who use their brains in an investigative manner, allowing space for curiosity and open-mindedness, and a synergy of puzzle pieces. I expect that to be my own practice too. Of course there is room for magic and miracles, of course there is learning to be had. I’m open to it all.

Thanks for all your well wishes, and I’m sorry if my silence had you concerned. But you know me by now. Whenever I’m quiet so long there is always something going on.

I’m busy getting well. That’s what’s going on. Messy business, but I’m making progress, and things will be back to some semblance of normal here just as soon as I have the energy for it all.

Sending so much love your way, Nicole xx

Image from emiliesquotes.com

Image from emilysquotes.com

 

Measuring Progress

“Progress means getting nearer to the place you want to be. And if you have taken a wrong turning, then to go forward does not get you any nearer.
If you are on the wrong road, progress means doing an about-turn and walking back to the right road; and in that case the man who turns back soonest is the most progressive man.” 
~ C.S. Lewis

 

I spent the morning with my Lyme doctor yesterday. It’s been over a year since I embarked on a strict regime of diet, supplements, herbs and industrial quantities of various drug combinations. On top of my pre-existing meditation and alternate therapy practices that have kept me alive and functioning thus far, defying conventional prognosis.

Yesterday was all about evaluating my progress this past year, and determining our next course of action.

I went to my appointment armed with a list of symptoms: those which had improved, those which had worsened, new symptoms and those which have resolved and gone away. My list was only slightly shorter than War and Peace.

Image from Claire in London

Image from Claire in London

So, how did I go?

I can’t actually tell you yet.

I have a fistful of blood work tests that need to be done. I have to pee in a jar and poop in a cup.

I have to make appointments for a brain MRI, ultrasounds and scans of various organs and body parts. There is every kind of test for my heart.

2014-04-05 06.03.56

And in the meantime I shall be drug and herb free. Two glorious weeks without this punishing regime of horrors. I feel like a kid at the beginning of summer vacation, with all those beautiful clear days stretched out ahead of me.

Once my results are in, we’ll formulate a new treatment plan, my doctors, alternate therapy practitioners and I.

I am looking forward to comparing where I am now with the results of previous tests and scans. I am hoping for good progress.

In the past thirty years, while I have dealt with declining health, often the only way to evaluate my progress or response to various healing agents was how I felt. I know lots of people who use that technique for evaluating their progress with Lyme treatments. And I think that is valid to some extent. If you feel better, you must BE better, right? And if you feel worse…

Truth is, I have felt WORSE, sometimes much worse, over the course of the previous year, as I have knuckled down and followed this healing path.

And I have had many times in my life where I have experienced a lessening of symptoms, or an upward swing for a while. When you live with chronic illness any kind of better day or improvement in energy and function, even if that improvement is marginal, seems like a really BIG thing.

But until last year, few of my improvements have ever lasted. And scientific evaluation of my condition over time, using evidence based medicine, prove that prior to 2013 I continued to deteriorate. Although, in my defense, I have stubbornly refused to die, even if that was my expected trajectory! 🙂

So, I welcome this next barrage of tests. I welcome being able to use the best that science and modern medicine can give me. I want to be able to critically evaluate what’s working, what isn’t, and working out from there where we go next. Yes, I am the psychic who embraces quantifiable results and proof of change!

I am hoping for measurable improvement. I’ll keep you posted as to how I go.

Image from Chronicles of Illusions

Image from Chronicles of Illusions

PS 🙂 Thank you to everyone who has contacted me with advice and suggestions.   Some of your ideas and treatments have been happily embraced by myself and my very open-minded doctors. An especially big thank you to all the lymies who have given me tips on coping with herxing or who have suggested alternate therapies, herbs, essential oils and so on to compliment my current drug regime.

Thank you to my friends and readers. Your healing energies, prayers, letters and words of encouragement have meant the world to me, and have kept me going through the darkest of times.

 

And for all if the people who have contacted me with suggestions about changing my obviously-flawed thinking which caused my disease (Dude, get with the 21st century – they are actually called pathogens and you can see them under a microscope!) , repenting of sins, God’s cursing of psychics, past life regressions as THE definitive treatment, multi-level marketing product miracle cures accompanied by pages of written testimonials about people feeling better, and stories of people who have cured their Lyme disease with a crystal, drinking their own urine (I went there already and it didn’t work!) thirty-day water fast (tried that too), psychic surgery,  amazing technological device or  a simple solution of bi-carb soda or other common household product, thank you. I’m always opening to expanding my knowledge and trying new things. However… If you can claim a cause or cure, I would appreciate your evidence and long-term results to back this up.

Status Update – Unavailable

2013-10-30 09.55.32

“For a while” is a phrase whose length can’t be measured. At least by the person who’s waiting.” 
~ Haruki Murakami, South of the Border, West of the Sun

We’re all waiting. Waiting for Nicole to finish this round of drugs.

It’s hard going.

One week, three days to go.

Not that we’re counting…

Meanwhile, Nicole sleeps and dreams of flying with Auntie and the Grandmothers. Spirits whisper in her ear. She’s being shown such interesting things.

When she’s awake Bert tells her all about the food she can cook for dogs this blog. She’s getting a lovely list of meaty dog food recipes kitchen inspirations. Brave Harry keeps her safe from flies, moths and the cows outside the bedroom window.

We promise, normal broadcasting shall resume just as soon as humanly possible.

That is all for now.

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The Curious Case of Clothespeg Matching

Image from www.gdefon.ru

Image from www.gdefon.ru

“Be regular and orderly in your life, so that you may be violent and original in your work.” ~ Gustav Flaubert

Something interesting happened yesterday as I was pegging out the washing. Well, interesting to me, anyhow…

For all of my life I have shaken out each item, and pegged it neatly by corners or seams. I take a piece of laundry, dip my hand into the peg basket, and repeat, repeat, repeat until I’m done.

Yesterday was a big washing day. Five loads. And as I neared the end, clothesline groaning under the burden, I realised that somehow in the last little while I have become a peg matcher.

This is not something that EVER mattered to me. In fact, I wasn’t even aware that matching the colour of your pegs could be a deliberate act.

For decades I have simply taken random pegs. But yesterday I looked at the evidence. Here a pillowcase with two red pegs. There a sheet with two blue pegs. A t-shirt, two white pegs. Jeans, two more red pegs. And so it went. Not a single random allocation of colours.

2013-09-12 16.53.47

Hmmmm.

And there’s more.

Suddenly, after endless months (years actually) of struggling with strategic story ideas, editing, plots and timelines I am creating complex interactions, and jotting down page after page of notes and wild imaginings. I can see where things need to be fixed or worked on. I can feel the flow of words again.

On the one hand I have become orderly, structured and with a yearning for systems and neatness.

On the other hand I am experiencing a riotous explosion of creative chaos and expansive thinking.

I’m putting it down to my lyme meds. As all of these horrid bacteria in my brain die off, the old grey matter appears to be functioning better. Oh my goodness. My brain is starting to work again!!!

It’s been a hard road on this treatment regime, and there’s so much left still to do. But I can honestly see improvement. I have more energy. My balance is improving. My heart is beginning to behave. The vista of my life is beginning to widen in front of me and possibilities I thought closed to me for ever are opening out. So, I will stick to these drugs. I will stick to this diet. I will persevere through the awfulness. Because something is working – I am slowly healing and being restored to myself.

Hooray for peg matching! I wonder what other changes there shall be?

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It’s an Eyeball Thing…

Image from Etsy

Image from Etsy

“If you can’t laugh when things go bad – laugh and put on a little carnival – then you’re either dead or wishing you were.” 
~ Stephen King, Under the Dome

I have an eyeball thing going on right now, so I’ll keep this post short.

My poor left eye is not happy with all these meds I am taking to kill my lyme disease and other nasty co-infections. So it’s protesting by doing this wiggly little dance up and down in my skull, otherwise known as nystagmus.

Makes it kind of hard to focus. So writing is tough. My plan today is to sleep long enough that when I wake up it has miraculously fixed itself.

Fingers crossed…

And if it doesn’t?

Well, it gives me a great reason to wear my trusty pirate eye patch.

Who doesn’t look better as a pirate!

Image by Alpha Mom

Image by Alpha Mom

My Left Eyeball…

Image from flickr

Image from flickr

“What does not kill me, makes me stronger.”

Friedrich Nietzsche

I had intended a different post for this morning, but I have an eyeball problem. I’ve been on my Lyme drugs, well the first of them anyway, for a month now, and they are doing strange things to me.

All night, apart from the ‘normal’ sensations of insects crawling on my skin, deep stabbing pains in strange places, and nausea, I have had a feeling not unlike someone stabbing my left eyeball with a toasting fork, and then slowly roasting it over a fire.

My left ear is also on fire, and intermittently stabby.  What joy.

I have devised a three point management plan depending on whether this escalates into totally untolerable. Plan A: Right now I’m sitting with a damp warm cloth tied over the offending eyeball, hiding it from the light and trying to reduce my pain. I shall soon lie in a darkened room and hope it goes away. Plan B: If it stays this painful ring Doctor when their rooms open. Plan C: If I can’t stand it, or it gets any worse get a friend to drive me to the hospital.

These Lyme bacteria invade everywhere. Organs, tissues, cells. They colonise and have parties, they multiply and and they invite their friends. Some of these critters have set up home in my eye, and now they’re unhappy because my drugs have found them.

It’s making me quite grumpy.  Quite grumpy indeed. And stubborn.  As I swill this morning’s drugs I have quite the attitude.

“Die, you miserable pathogens, die!” I want to shout.  I am not shouting though.  My eye is sensitive to noise, I think.

Now I shall lie down and dream of being a fearsome female pirate, sailing a Lyme Green Sea, and killing all the things…

Image by www.ops.org

Image by www.ops.org

Diagnosis – Lyme Disease

Image from www.caryinstitute.org

Image from www.caryinstitute.org

‘All delays are dangerous in war.’ ~ John Dryden

There’s a war going on in my body.  In fact it’s been going on for a quarter of a century.  First there came the enemy invasion. There was no loud and obvious display of force. Instead it was an invasion by stealth. A mass of tiny bacteria, regurgitated from the stomach of a tick, entered my body via its bite.  My body fought back, and it’s been fighting ever since, but this is a war where the odds for victory aren’t high, and decrease resoundingly over time.

Amazingly, I recorded a tick bite in my sister’s school diary in August 1984, and actually taped the tick to the page! (Why would I do that?) A short while later I was diagnosed with German Measles, but looking back I am sure my rash was tick related, and anyway I had already had measles, and at the time no one else at home or school became sick. I was sixteen years old; bright, ambitious and high-achieving. Sadly, that was all about to change.

For some reason Simone remembered and dug the book out, all these years later…

TickInDiary5

Oh my goodness what a rough road it’s been since then.

My recent diagnosis after years of chronic illness is end-stage lyme disease with heart and neurological complications. I first received a clinical diagnosis of lyme weeks ago, based on my medical history and symptoms.  But I have come to distrust diagnoses – I’ve had so many, and been so disappointed when I’ve not been able to be healed of these things, or the diagnosis has later proven to be wrong. Then, two days ago, I received lab results that made the diagnosis definitive for me.  I finally have a piece of paper I can hold in my hands, reassuring me this whole thing is most definitely not my imagination.

It’s not a great diagnosis. There is much collateral damage after such a long time with this war raging within me. My results list brain lesions, advanced Hashimoto’s thyroiditis, lyme carditis and dilated cardiomyopathy, a weird undiagnosable multi-drug resistant gut parasite, severe adrenal fatigue, almost zero DHEA or cortisol or other good hormones, tumors on my ovaries, enormous uterine fibroids, lots of deficiencies due to malabsorption issues, and in fact I could go on. It’s a long and very depressing list, and the catalyst for it all is Lyme…

Here’s my brain in 2000. It’s much worse since then. In fact, I stopped getting SPECT scans because they became more and more depressing.  There is nothing quite like watching your brain get hole-y and feeling your cognitive function slide. Luckily I had a genius IQ to start with (seriously – LOL) so I had a little more up my sleeve, or at least that’s what I keep telling myself!

SPECT Scan A

I have fought for a diagnosis for a long time, and I’ve had many. Included in the list have been Chronic Fatigue Syndrome, Ross River Fever, Q fever, multiple chemical sensitivity, ME, Fibromylagia, Post Viral Syndrome, rheumatoid arthritis, lupus and multiple sclerosis (both later recanted), Bell’s Palsy, Guillain Barre, Acquired Brain Injury (I love this one – it sounds like I went down to the shop and just ‘picked one up’…), depression, non-specific auto-immune disorder, mitochondrial disease, endometriosis (but my gynacologist can only ever find gross inflammation, NOT endometriosis affected tisssue), and recently ideopathic dilated cardiomyopathy and congestive heart failure..

I’ve also been told over the years that this is all in my head, and that my condition is psychiatric. That’s done so much damage.  I doubt everything that happens. I blow off the worst of symptoms and take ages to act on new health problems. After complaining of severe chest pain on many occasions to my general practitioner, I was told it was stress related, given a script for ‘something to relax me’ and advised to ‘learn to meditate’. It was recorded in my chart that I was a hypochondriac two days before I was hospitalised with a major heart attack.

I always knew there was something VERY wrong, but it has been so hard to find doctors who would take me seriously, or who could manage me on an ongoing basis.  I’ve seen so many specialists and natural therapists, I’ve spent hundreds of thousands of dollars on my health, and it is still my greatest ongoing expense. I’ve done everything you can possibly imagine in my quest to be healthy, but it’s never worked completely, and I’ve never achieved wellness.

Past life regressions?  Done. Faith healers, reiki masters, and psychic healers? I’ve seen the best. Diet?  I have tried and complied for YEARS with many, including being a raw food vegan, fasting, a macrobiotic vegetarian, an elimination and anti-candida low allergy diet, food combining, paleo, body ecology and a few other weird and wonderful ones.  I even drank my own wee!

Image from www.ukskeptics.com

Image from www.ukskeptics.com

I’ve IV chelated until I whimpered with pain at every session and vowed I would rather die than do one more treatment. I’ve detoxed and sauna’d, had my blood removed from my body and passed through ultraviolet light before being pumped back in again, I’ve done health retreats, hypobaric chambers, hormone therapy, psychology, psychiatry (they said my problem was physical and send me to an infectious diseases specialist), seen a geneticist, cardiologist, immunologist, gynecologist, ear nose and throat specialist, rheumatologist, environmental medicine specialist, and many other wholistic doctors and clinics. I’ve tried EVERY form of natural and complimentary therapy, and most of the multi-level marketing pills, potions and lotions.  I’ve also used vega machines, biofeedback, Hulda Clarke’s zapper machine and held onto electric fences in fits of inspired desperation after reading about farmers who had cured themselves of Ross River Fever doing the same thing…

I still use homeopathy, meditation, acupuncture, chinese and western herbs, nutritional supplements, chi gung, diet, chiropractic and prayer. In fact, I am convinced that my twice-daily meditation and visualisation sessions have saved my life and maintained my ability to function.

Over time I have become very good at managing my condition, and keeping things in a crazy kind of semi-balanced state. But if I’m honest it’s not living. It’s existing.  Existing with good bits and gratitude, yes, but I have been robbed of so much. So many years and opportunities I will never get back.

There is an upside, of course. I have gone deep within. I have done more work on myself than I ever would have, had I not walked this path. When everything else failed, I have always had my psychic ability and my spiritual connection. It is the one thing that allows me to say I wouldn’t trade this if this is the gift I received in exchange. But it’s a gift that isn’t very useful if I’m dead, which is the way I was recently heading.

So, now I have a diagnosis, what next?

One doc says it’s manageable but not fixable, one doc says it’s sort of treatable although he is not hopeful of a positive long-term outcome this late in the game, and one doc says to me I have drugs for the bacteria, and they’ll make you sick, but they might make you well – what do you think, Nicole?

I said ‘Give me drugs. Give me all the drugs. Cos I’m gonna kill all the things!’

kill all the things

In my long war I have used everything else, and it has all helped. But I have never used targeted antibiotics, anitparasitics and anti-microbials. So now I have a fistful of scripts and I shall rattle like a maraca but it’s something. And I am hopeful. Hopeful I can mend my heart and my brain.  Hopeful that my future here is not only a long one, but one with a better quality of life.

I’ll keep you posted. And I may spend a little more time blogging health things and wellness things, in with my usual mix of stuff. Over the past 25 years I’ve learned so much about health that has aided my journey. Perhaps some it will be useful to you too.

If I have one message for you out of all of this, it’s this: Back yourself.  Trust yourself.  We always know deep down, when something isn’t right.  Don’t ever give up looking for answers. Don’t ever give up expecting that you can have a better life.

Much love to you, Nicole ♥ xoxo

Image from www.weheartit.com

Image from www.weheartit.com

Some useful links:

Lyme Disease Association of Australia

Karl McManus Foundation Australia

Lyme Disease Association, Inc United States

The Canadian Lyme Disease Foundation