Dancing Out Of the Lymelight

Green Dancer by Adriane Pirro

Green Dancer by Adriane Pirro

“Stubbornly persist, and you will find that the limits of your stubbornness go well beyond the stubbornness of your limits.” ~ Robert Brault

 

I’m off to see my Lyme Doctor today, and I’m hoping for a good report.

In the last few months I’ve noticed real and sustained change. I have more energy. People tell me I look better. My brain works and I can access words I’d thought long forgotten. I can read maps again. I can recognise and add numbers after more than twenty years of being terrified of anything to do with maths. Music on the page looks like notes and rests rather than spaghetti with splotches. My reflexes and balance have improved. I have less pain. More mobility. Fewer fevers and other symptoms. Finally I feel that my future is opening out in front of me, when for so long all I have known is the end of the rope and my fingers in a vice-like grip at that knotted end, stubbornly holding on.

I had a moment recently when I knew. Knew for sure that I had turned the corner.

I wa sitting on the edge of my bed, on the evening of the first day of my channelling retreat. It had been a big day, after many big days. It was late. The world was quiet. And I held my meditation mala in my hand, ready to pray and meditate for my students before I turned in for the night.

Suddenly my cheeks were wet with tears.

Here I was, sitting in this familiar room. I’ve held many retreats at this place now. It feels like home, in a way.

But something was changed.

I was changed.

Some years ago, when I ran my first retreat at this place, I had just been given a prognosis of perhaps six months to live. I was in congestive heart failure with dilated cardiomyopathy. My organs were failing. Every breath was a struggle. One side of my face was completely numb from Bells Palsy. Back then I didn’t know I had Lyme. I just knew that I was dying. Every footstep was a struggle. I fought so hard for every conscious moment. I was worried that I would never be able to do my work in the world. Never share my stories. Never reach out and help more than just this handful of people. Never have time to be well enough to enjoy life, or to make up to my husband the many years of our life we had lost already to this wretched illness.

I hummed with a brittle hope mixed with equal parts of despair.

Now, here I was, a few years post-diagnosis, with strength in my bones. No chest pain. No struggle for breath as I walked up an incline or a few steps. Inside me I could feel grace and power and energy. I could feel life force. I could feel possibility.

Somehow I’ve moved from dying back to living. It’s like someone flicked the headlights to high beam and instead of fumbling along the road in the dark I have a clear run, and a well illuminated path opening out in front of me.

All because some brave doctor was prepared to go out on a limb and diagnose me with Lyme. (But they wouldn’t treat me. It was too controversial, they said. A risk to their career.)

Another brave doctor treated me. When they got closed down there was another doctor there. And then another. So much secrecy. So much clandestine medicine. All to give me my life back without ruining theirs.

It saddens me that this disease is still so poorly recognised, that the effective treatment protocols for Lyme and co-infections are questioned, that people like me go undiagnosed for miserable decades, and even after diagnosis Lymies struggle to find anyone willing to actually treat them. It breaks my heart to know that Lyme doctors are persecuted for doing their best to help their patients find a path back to wellness.

The Lyme community is an awesome one. We share information with each other, and provide support when there is little to be had within our own networks or families.

Image from boxyblogs.com

Image from boxyblogs.com

I’m one of the lucky ones. I have been able to find a way forward. I could afford treatment. I had the ability to research and educate myself about health and healing. I’ve had a roof over my head, some income still, and a husband who has stood by me through the worst of times.

Finally, I’ve turned this corner.

I can’t quite find the words to tell you how that feels after more than thirty years of being prisoner to this thing.

My legs are shaking as I stand at the unlocked door of the cage that has held me trapped for so long. My hands are trembling as I push against those bars so that I might step towards freedom. I need this to be true for me. If it’s a dirty trick I don’t know how I’ll cope.

I’ll confess too, that there is a part of me holding back, waiting. Just in case… I need for this to be a lasting change, rather than the calm eye at the centre of a storm.

I’m still so full of dreams and plans. I’m humbled and hopeful that this might truly be my second chance.

I pray it goes well for me today. Here’s hoping.

Much love, Nicole <3 xoxo

The Gift Of Blood

“How far that little candle throws his beams!
So shines a good deed in a weary world.”
~ William Shakespeare

 

We have a loved one going through aggressive chemotherapy right now.

One day a fortnight powerful chemicals flow into her veins. Each following day her blood slowly loses life.

A week after the chemo she has a blood transfusion. Vitality is restored.

Blood gifted from strangers keeps her alive as her body and the drugs fight the cancer.

Such a kindness from people she will never meet. People who are going about their daily lives with little or no thought to the battle she is fighting, or how the short time it took for them to ease some of their own blood into a storage bag is now buying so much more precious time for her.

I’m humbled by the life-giving power that flows through our veins, and by the generosity of humans who simply want to be of service to others.

Thank you, on behalf of our family.

And please, if you’re able, donate blood. It truly is the gift of life.

 

Turmeric and Ginger Tea Recipe

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“In Ireland, you go to someone’s house, and she asks you if you want a cup of tea. You say no, thank you, you’re really just fine. She asks if you’re sure. You say of course you’re sure, really, you don’t need a thing. Except they pronounce it ting. You don’t need a ting. Well, she says then, I was going to get myself some anyway, so it would be no trouble. Ah, you say, well, if you were going to get yourself some, I wouldn’t mind a spot of tea, at that, so long as it’s no trouble and I can give you a hand in the kitchen. Then you go through the whole thing all over again until you both end up in the kitchen drinking tea and chatting.

In America, someone asks you if you want a cup of tea, you say no, and then you don’t get any damned tea.

I liked the Irish way better.”
~ C.E. Murphy, Urban Shaman

 

Turmeric and ginger tea is a zippy little brew.

I drink this tea daily, first thing in the morning after my meditation, and have found it to be a very useful addition to my healing regime for Lyme disease. It might help you too.

Thanks to the turmeric and ginger, this tea has anti-inflammatory, anti-bacterial and anti-viral properties. It supports your immune system, and liver function. It is soothing to the digestive tract, improves digestion, and boosts metabolism. The lemon ensures that this beverage is alkalinising for your body, and rich with vitamin c and antioxidants..

Maple syrup helps break down biofilm, which is an important benefit for those suffering from borreliosis (lyme disease) and associated bacterial co-infections.

Turmeric and ginger tea is a delightful brew to start your day, and can be enjoyed hot or cold, depending on the weather and your mood. Your liver will love you for it.

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Ingredients for two cups – basic recipe:

A one inch piece of fresh ginger, washed and sliced finely.

A one inch piece of fresh turmeric root, washed and sliced finely.

Juice of one lemon (no need to strain, and lemon seeds are fine, giving their own unique health benefits in your brew)

Two cups of boiling water

One tablespoon of maple syrup – or more, to taste

*Fresh ginger and turmeric are best, but if you can’t source these use the dried powder. 1/2 a teaspoon of each will work, or adjust to your own taste.

Method:

Place all ingredients in a pot and let steep for four to five minutes before consuming.

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Optional extras:

If you have adrenal fatigue or chronic fatigue, and aren’t troubled by high blood pressure you can also add in  two to three slices of dried licorice root (found in many health food stores or Chinese herbalists or Asian grocery stores). Licorice root also protects and supports the liver, and can aid in treating depression. *Do not use licorice root if you have high blood pressure.

A pinch of cayenne pepper improves circulation and breaks down mucous in the body. It also helps regulate blood sugar. Be careful though, it’s very strong so start with a tiny little pinch.

If you are on a sugar-free diet it is fine to omit the maple syrup. You may also swap it out for honey or stevia.

Hint:

Add more water to the pot and steep again. You’ll get a tasty second brew to sip during the day.

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How To Do A Castor Oil Compress

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“The cure for our modern maladies is dirt under the fingernails and the feel of thick grass between the toes. The cure for our listlessness is to be out within the invigorating wind. The cure for our uselessness is to take back up our stewardship; for it is not that there has been no work to be done, we simply have not been attending to it.”
~ L.M. Browning, Ruminations at Twilight: Poetry Exploring the Sacred

 

I’m a big fan of castor oil compresses. Got inflammation in an organ or joint? Stiffness or pain? Constipation? Sluggish liver? Weak immune system? Fibroids? Ovarian cysts? Tendonitis? Irritable bowel or diverticulitis? Pelvic pain? Infection? Castor oil compresses help with all of these things. They are anti-inflammatory, anti-bacterial, lubricating, and stimulate circulation and the production of lymphocytes.

A castor oil compress involves placing a cloth soaked in castor oil over the affected area, and then applying heat to encourage the oil to penetrate into the body.

Here’s how you can make one for yourself or a loved one:

Materials:

  • Castor oil (you’ll need a minimum of 100ml, but have more on hand)
  • A large square of soft flannel, such as from an old towel
  • Some old towels
  • A bowl to hold the cloth while you soak it in oil
  • A hot water bottle or heat pack
  • A plastic bag or large square of plastic, or plastic wrap
  • A ziplock bag big enough to hold the castor oil cloth when the treatment is finished
  • Two teaspoons of bicarb soda in a cup of warm water (for washing the compress site after the treatment)

*Note: If you have sensitive or reactive skin do a patch test on yourself first by rubbing a small amount of castor oil onto the skin of your wrist. Observe for several hours. If no allergic reaction occurs you can proceed with confidence. Also, if you’re a female, don’t do a compress over your pelvic area when you are menstruating.

Method:

  1. Fold the flannel into two or three layers and place in a wide bowl. Pour the castor oil over and leave it for a few minutes to soak into the cloth. Use enough oil so that the cloth is soaked but not dripping.2015-06-14 19.13.142015-06-14 19.14.02
  2. Put an old towel down before lying down for the affected area to be treated. This will protect furniture or bedding. It’s also a good idea to wear old clothes, as castor oil can stain.
  3. Place the compress over the affected area of the body. Lay the plastic sheet, bag or wrap over the compress. If you are using the compress on a limb, wrapping with plastic wrap can help secure the compress in place, as well as stopping leaks and drips.
  4. Now put the heat pack or hot water bottle on top of the compress area. Cover this all with another old towel to help keep the heat in.
  5. Relax for a minimum of thirty minutes to a maximum of sixty minutes.
  6. Remove the compress, and place the castor-oil soaked cloth into a ziplock bag. It can be re-used several times before being washed or thrown away.
  7. Wash the area with the weak bicarb soda solution. This will remove any residue on the skin, or any toxins that have been brought to the surface.
  8. You can also massage a drop or two of therapeutic grade lavender oil into the skin to finish.

Castor oil compresses can be used daily when needed. Keep re-using the same compress, adding more oil to it as needed. Throw it away when the colour begins to change, or if it develops an odour.

Where’s Your Focus?

Image from reddit.com

Image from reddit.com because, well, pirates! And you know how I love pirates. :)

“Very occasionally, if you pay really close attention, life doesn’t suck.”
~ Joss Whedon

On Friday I posted about a beautiful ordinary day, and how much I had enjoyed such simple things as a trip to the farmers’ markets, clean sheets on the line, sunshine and crisp ripe apples.

After that post I received two emails, extracts of which are below:

That might be fine for you, Nicole, but not all of us live in Byron Bay. Not all of us have a beautiful life.

and

You obviously aren’t that sick, although you say you have lyme. No person with a chronic illness could enjoy the kind of life you have.

I guess that I need to be honest then, and admit that not all of my day was what you might consider beautiful. In fact it was downright ordinary. But I omitted those details from my Friday post.

I can list those things here:

  • As a result of my current course of drugs I have neurological urinary incontinence. I wore an adult diaper to the markets.
  • As a result of the drugs, the bacteria dying, and my poor liver not coping with increasing levels of toxicity I was covered head to toe in a fierce rash and weeping eczema. Agonising, and ugly too.
  • I was plagued by a sense of impending doom – the kind of feeling a psychic gets when they know something is about to happen, over which they have no control, but by which they will be impacted.

Here’s a photo of me a week ago, just before my last round of IV drugs. It was the best I’d felt in months and I was teaching myself how to take a selfie so I would have a picture of me for my new website. It was fun. I put on lipstick, and wore a jacket that made me look dressed for going out. I like this photo. I have clean hair, I’m standing in my garden on a bright autumn day, and it’s a headshot, so you can’t see my pyjama bottoms or my big-girl pull-up incontinence pants. About four photos later I worked out how to look into the camera instead of at my hand…

Nicole Cody

And here’s a couple of me taken last Thursday in Brisbane. Just before beautiful ordinary magical Friday. Here’s the rash that began to creep up my limbs and made me want to claw my own flesh off my bones.

lyme rash hand

Here’s my face, which was covered in blotches. I won’t share the photos of the weeping, bleeding rash behind my knees, under my arm and right across my chest and left breast. My face went that way too, by Friday morning.

Why am I sharing this? I have lived with chronic illness and daily misery for thirty years. That thirty years has taught me a lot. Once upon a time I would have been the person who sent plaintive, judgemental or whiney messages to others, whom I felt had no idea how much I was suffering and no right to say that life was good, when it plainly wasn’t.

But that kind of thinking ruins any chance you have of having a rich and satisfying life.

So I adjusted my focus.

No matter how crappy my day gets, I look for beauty. I look for the small pleasures, the tiny details of comfort and joy, the things that will make my day memorable, or at least tolerable.

It’s become one of my superpowers. And it could easily become one of yours.

We can’t always control what happens to us, but we can control how we react, we can control our thoughts, and we can control our focus.

On Friday I didn’t focus on my distress and discomfort. In fact, I worked hard to not focus on them and to look for the beauty around me.

As I ate my dinner in front of the fire early on Friday evening I reflected that it had indeed been a very beautiful ordinary day. That’s my secret. I know that every day can be a beautiful day, or at least have elements of beauty hidden within it, just waiting for an observant eye and an open heart.

So, I have to ask you…

Where’s your focus?

Image from quotesicons.com

Image from quoteicons.com

We Need To Talk Wee

Photo by Nancy Rubin

Photo by Nancy Rubin

“Shame is a soul eating emotion.”
~ C.G. Jung

“We learn humility through accepting humiliations cheerfully.”
~ Mother Teresa

 

A few years ago I wrote a blog post about vomiting in public places. It was quite controversial. Many people thought that talking about vomit was something one shouldn’t do in polite company.

Nice girls don’t talk about vomit.

Nice girls don’t vomit in public places.

But the fact is, all of us, at one time or another – have been ill. Have been unable to control what was happening inside us, or what came out.

Why is it then, that there is such shame about our bodies and their functions? We all have bodies. We all breathe, ingest, expel.

Cars break down. Waist-band elastic gives up. Jumpers stretch. Buckets spring leaks. Computers fail. Things age or get broken and lose functionality. Why not humans?

Image by kataang6201

Image by kataang6201

I’ve recently been undertaking a new drug regime for one of the co-infections that are common with lyme disease. Over thirty years, lyme has given me an abundance of shameful and humiliating moments, symptoms and afflictions. This current treatment is working well, but it has also had some very uncomfortable side effects.

It’s usual to herx when you’re killing bacteria. As they die the bacteria release toxins into the body, causing a herxheimer response. Inflammation and toxins can cause headaches, gastro upsets, pain, rashes, fevers and fatigue, among other things. I’ve become quite the pro at managing herxes, and also my medication dosage rates so that I don’t herx too aggressively – which can become a dangerous thing.

This time, while on old-school IV anti-malarials two things have happened. Firstly, early on, I began to slur my words and sound like a drunk. This has happened before. It was intermittent, but annoying and then it stopped after a few weeks. Luckily I was mostly at home in my pyjamas, so it was quite a manageable thing.

The second thing caught me by surprise, while I was at my doctor’s rooms not long after beginning my first treatment. I was standing, talking to my doctor, feeling quite good, when they said to me, “Ah, Nicole, you’ve just wet yourself.”

Yep. We need to talk about wee…

I looked down and sure enough I was drenched in urine. It had soaked my jeans, and was running into my boots as well as puddling on the floor. My dear doctor, who had been planning a gym visit later that day, lent me a pair of dry tracksuit pants and I hightailed it out of there, feeling quietly humiliated although the doctor had been nothing but kind and supportive. I mean, what grown-up non-comatose-drunk adult pees their pants for no good reason?

I convinced myself it was a response to having sat at the end of an IV drip for the previous hour. But the next day I was standing at the clothesline, hanging out some sheets and it happened again. A stream of wee running down my legs, when I’d had no warning. No urges. Nothing.

Suddenly I found myself in a situation where I had no control over my bladder.

Welcome to the world of neurological-induced incontinence.

When I mentioned that I was going to blog about wee yesterday, women in the know nodded their heads. For some women a sneeze, a laugh, a cough, vigorous exercise and a little wee just squeezes out. Urinary incontinence is common in women during pregnancy and after childbirth. It can also be triggered by a prolapse, fibroids or endometriosis, and menopause.

Prostate issues and prostate cancer or the side effects of prostate treatment is a major cause of incontinence in men. Medications, injury, nerve damage, asthma, obesity, diabetes, arthritis, Parkinsons, MS, dementia, lyme and other chronic illness can create incontinence issues. Head injuries are a common contributing factor.

Anyone can be affected. And it’s something no-one talks about.

For some people urinary incontinence is a feeling of urgency, or a little leakage. For me it has been full-blown uncontrollable complete emptying of my bladder.

I used to laugh at the Tena Lady ads on television. I’d make jokes about Depends undergarments. But suddenly I needed to use them.

 

My incontinence wasn’t caused by pelvic floor weakness or infection – my problem stemmed from the brain. I’ve suffered bouts of neurological incontinence before. It has been infrequent, and usually when I’ve been very, very ill. It has sometimes been triggered by antibiotic use (which induces herxes). Sometimes it has been triggered by the bacteria themselves as they have taken up residency in my brain. Each time it has been embarrassing, limiting and sometimes downright humiliating.

This time my incontinence has been prolonged rather than an occasional random incident. Almost two months of almost daily ‘accidents’ – a flood that could not be held or managed by a Tena Lady discrete incontinence pad.

No, in the end I’ve needed adult diapers – the equivalent of big-girl pull-ups. I really wanted to believe that I wouldn’t need them. That somehow it was a passing phase, and I’d regain control. But after I wee-ed on every single pair of pyjama pants and tracksuit bottoms in a single day, relegating my entire comfy clothes wardrobe to the wash, I capitulated.

I googled adult incontinence devices. How reassured I was to see these magical underpants absorb whole cupfuls of gaudy pink liquid. How disquietened I was to think that I might need plastic undersheets and an epic amount of odour mitigation.

This wasn’t how I’d wanted my life to be. (Please don’t tell me shit happens – that’s a whole other blog I am equally qualified to write!)

Image by Corey Wilson

Image by Corey Wilson

At first I was too embarrassed to leave the house. Too embarrassed to have friends over. I was worried I stank of wee. I was worried I’d have an accident and wee in public.

After I got my big-girl pull-ups I was so self-conscious. I was sure you’d be able to notice them under my clothes.

And what if they leaked?

Babies wear nappies, and babies have epic leaks. Ask any parent. Any nurse. Any childcare worker. Or get brave and ask any aged-care worker, like I did. Yep, adult nappies can leak too.

Cue all of that insecurity I first experienced wearing a menstrual pad.

I thought about not drinking water before I had to go anywhere, but water was an important part of my detox routine to manage the herxes. It was a no-win situation.

So in the end I decided to accept that for now, normal meant wearing my big-girl pull-ups. I packed extra pull-ups and extra clean underwear and pants in my bag, and I got on with my life.

I am now a mother to myself. There is no way I’d let myself sit in a cold wet diaper for hours. Unlike many people with illness, disability or frailty I’m blessed with the ability to change and look after myself.

For the most part, it’s actually been okay. And I’ve been sharing what’s happening with me, as much as it has sometimes caused embarrassment or discomfort in others.

As this round of medication ends the incontinence issue should subside. But for me this whole wee thing has been a huge learning curve, including one of supreme self acceptance.

I don’t think these simple human issues should be given the silent treatment. I never thought incontinence would happen to me (certainly not while I am still young), and now it has I find that it also affects so many other people or their family or friends. Perhaps I wouldn’t initially have been so cripplingly shamed and worried if we were all more open about this.

If you suffer from urinary incontinence go have a chat with your family doctor. There is so much that can be done to rectify, cure or manage your situation.

The Continence Foundation of Australia is also a great place to find out more.

We’re human. We poo, we wee, we vomit, we leak. We have bodies that will work well one day, and not so well the next. It’s part of life.

Image from pinterest

Image from pinterest

One of those nights…

“She used to tell me that a full moon was when mysterious things happen and wishes come true.”
~ Shannon A. Thompson

Tonight will welcome May’s full moon.

I love a full moon. Unfortunately so does lyme disease. Many lyme sufferers find an acute ramping up of their symptoms in the day or two before a full moon.

Last night was a hell night for me. At the edge of sleep I woke up to that horrid wide-awake place. After which there was pain so bad that sleep, if I could have found it, was out of the question anyway.

Today I am barely functional.

It goes like that sometimes.

I’ll try and catch a nap today, and then brace myself for tonight. Or plan to be awake anyway and have a good book to read, a meditation to do, or some other welcome distraction.

It’s been a long while since I had a night like last night. They used to be a regular thing. So I know I’m improving. Gee, I HAVE improved so much. But lyme disease and its co-infection friends are still reminding me they’re here.

Truth be told I’m a bit over it today. A bit cranky. A bit disgruntled. A bit disappointed because of all the things I’d planned for today that will undoubtedly fall by the wayside now.

On the upside? The moon was beautiful last night, and the air, after all our recent rain, was sweet and cool and earth-scented.

To watch the transit of moon and stars across the dark bowl of the sky was a decent consolation prize.