Nic’s Latest Update: Life as a #Lymewarrior

brave

‘Brave’ by WillowWaves at www.deviantart.com

“O snail
Climb Mount Fuji
But slowly, slowly!”
~ Kobayashi Issa

“Bran thought about it. ‘Can a man still be brave if he’s afraid?’
‘That is the only time a man can be brave,’ his father told him.”
~ George R.R. Martin, A Game of Thrones

 

Ah, Lovelies,

I’d hoped to be bringing you a good news post, a happy ‘post-surgery things are looking up’ story. And it is true, some things have improved. I am out of hospital. I am home in Brisbane, although not yet home to my precious farm. After an entire month of having my hair in a bun on the top of my head I have finally gotten all the knots from my hair and washed it (a three day effort that only others with chronic fatigue or pain will understand!). I have moved from a shuffling gait to a slow walk.

But I’m not as far along my healing journey as I had expected. Because, you see, having Lyme Disease complicates everything.

Having Chronic Late Stage Lyme Disease means that I’m immuno-compromised. Which is why I picked up two infections pre-surgery, which were treated with a metric tonne of antibiotics to get me infection-free before my operation. Treatment worked, but I was a ball of misery as the antibiotics killed not only my infections but lyme bacteria as well.

Surgery went well. Longer than expected and more complicated. I needed unplanned bowel and bladder surgery and repair. But I came out of it strongly and was making a good recovery, even on the new metric tonne of iv antibiotics and antibacterials I was given.

Unfortunately I then I caught a new infection (via my catheter we think) just as I was getting ready to leave hospital the first time. Tests showed it to be an antibiotic-resistant urinary tract infection superbug. It still responds to some old-school antibiotics, but not regular ones, so I was placed onto those.

One tablet, three times a day.

Which should have cleared it. But it didn’t, so now I am on massively increased doses. This old-school antibiotic is also used to clear late-stage lyme (but my urologist and gynecologist know nothing about that – Lyme is well outside their fields). It targets and kills the cyst form of the bacteria by damaging its DNA. Awesome news. So now I am on a drug that kills my superbug AND lyme. (The typical Lyme dose of this drug is just one tablet three times a week.)

Lots of lyme bacteria dying means lots of herxing. So now I am in agony. It hurts to pee. It hurts to poo. I can’t see out of my left eye, and vision is distorted from my right. I am sensitive to light and to sound. My skin hurts. My teeth hurt. My bones hurt. Old injuries are aching and paining. My muscles spasm and cramp. I have a killer headache. I am hot and cold in turns. I can’t sleep. It feels as if someone at odd times is tasering me, or pouring acid on my skin. And then there is my belly wound which goes from hip to hip, and the fact that my insides feel like someone has stitched them into a too tight sausage casing and then punched me in the gut a few times for good measure. And the pinched nerve in my back which has rendered one arm numb and painful and much less mobile than usual. Which instigated a case of shingles. My balance and strength is shot and I need a cane to walk. Let’s just say, it is not one of my better adventures.

I spent most of last night cry-laughing on the toilet. Because of my recent bladder repair it only holds about 200ml of fluid before I need to go, and I need to be drinking LOTS of water right now to flush both the drugs and infection from my system. Peeing hurts. A lot. Before, during and after. Although at least the feeling of pissing razorblades has resolved as the antibiotics kicked in and began working on this little superbug of mine. Now it only burns. So I sat on the toilet more than I was off it. Crying and laughing at the same time, because it was funny but pathetic, and scary but also ridiculous, and as I cried and laughed I panted power phrases like ‘This is just f*cked’ or ‘You can do this, Nic!’ depending on what frame of mind I was in for any given minute.

My friend Jennifer visited me while I was in the hospital and gave me a little bracelet. Inscribed on it is the phrase ‘Be Brave’. Those two words have been a constant reminder to me in the past few weeks. Be uncomplaining. Cry if I need to. Pull myself together. Chin up.

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I am mostly coping okay with the pain and lack of decent sleep. I am being well cared for by Ben, Nurse Bert, Cafe Dog and my dear friend Carly. I have everything I need. The hard thing is my vision loss (which is a temporary situation, we hope, and one I have faced several times while undergoing Lyme treatment in the past). This last fortnight I have had limited vision. My left eye is a complete blur, and my right eye has a restricted field of blurry vision – if I wear glasses, cover my left eye and increase my screen magnification by 300% I can read for short periods, but it is exhausting and gives me a headache. I can’t write. The television is a blur. Do you know how much stuff you suddenly can’t do when you can’t see?

I can’t check my messages on my phone or my emails. I can’t see my phone well enough to call a number – but Siri is getting good use as I task her to read my texts or call my mum. I can’t blog or update you. (I needed help to get this post written and published.) I can’t read any messages you may have written to me, so forgive me if I have not responded. Thank goodness for audio books and imagination land, and for good conversation in small doses.

I’m also exhausted, and after ten minutes of anything I am ready for a nap.

It isn’t where I expected to be, four weeks after surgery, but this is where I find myself. Nothing to do but wait for improvement.

I am good at sucking it up. Truth be told though, I am more than a bit over it. Still, it is what it is and it will get better – just maybe not in the timeframe I’d hoped for (and I am ALWAYS impatient!)

I’m missing my Year of ME Planner and choosing oracle cards to guide my week. I’m sad to be unable to tick things off my to-do list. From experience though, I know that it will all be waiting to help me get back on track again with all my dreams and projects just as soon as I am able. Meanwhile my wonderful team are working on all kinds of lovely things for next year’s Planner, our upcoming courses and retreats, and my new website. (Thank you Dana, Bek, Kerry, Chelsi and my PI transcription crew!)

I’m still sending you so much love in my daily meditations and healings, and I’m grateful for all the good energy you’ve sent my way too.

Hopefully things will sort out sooner rather than later and normal programming will resume. I’m looking forward to that. I AM getting better, it’s just a slow and bumpy road. Fingers crossed that my healing gets fast-tracked very soon. I am choosing to see all of this as a fabullous opportunity to kick Lyme’s butt in a bigger way than I had ever dreamed!

Hugs and love, Nicole xx

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Boobs!

THE WOUNDED AMAZON, Marble statue Metropolitan Museum, NY: wounded Amazon (Roman Copy, probably after Polykleitos or even Kresilas or Pheidias) c. 450-425 BC.

THE WOUNDED AMAZON, Marble statue Metropolitan Museum, NY: wounded Amazon (Roman Copy, probably after Polykleitos or even Kresilas or Pheidias) c. 450-425 BC.

“The truth of the story lies in the details.”
~ Paul Auster

 

Sorry. I couldn’t resist. When else would I get to shout ‘Boobs!’ as a title for a blog post?

Because today, dear readers, it’s all about boobs. My boobs.

Today is mammogram and ultrasound day as my very thorough specialist ticks every single thing on his rather big checklist in my lead-up to surgery.

Hoopla!

Although, to be honest, like all the other tests I’ve done thus far I don’t expect it to be fun, or even comfortable.

So it’s boobs all morning for me.

Then a spot of lunch in the hospital cafe.

After which they will look at my heart, which means more boob action really…

 

I’ll be quite busy while all the medical technicians and doctors are doing their thing.

I’m carrying around a snippet of my memoir in my head that needs some editing. It’s a wild space in the Kimberley where my aboriginal aunties took me once, so that they could show me a special little bird. As the hospital machines click and beep, and things are done to my surrendered body, I’ll be focusing in on the landscape of my mind, doing my best to remember in vivid detail the smell of the dust and the heat of the sun so bright in the sky that I could only squint beneath the brim of my broad hat. I’ll think about the wonder of this hidden place my aunties showed me. The way we left our vehicle and walked single file along the track to find it. The way the sunlight sparked on the water in the creek. The steep cool rock walls and the lush green foliage. The chirruping calls and flash of wing. The way we all waded into the water in our clothes and sat down silently. All of us watching, watching and waiting. Waiting for the little bird to appear. That’s where I’ll be today. I’ll be back in time, someplace else, happy and safe, remembering.

I’m sure it will be a useful day all round.

Lots of love to you all,

Nicole <3  xx

Accidental Angels

Magpie-in-a-tree-703x469

“A magpie can be happy or sad: sometimes so happy that he sits on a high, high gum tree and rolls the sunrise around in his throat like beads of pink sunlight; and sometimes so sad that you would expect the tears to drip off his beak.
This magpie was like that.”
~ Colin Thiele

 

I’ve had a restless night.

Pain. Broken sleep. Fevers.

But I came back into my body after a few hours of snatched sleep, and as I lay there with my eyes closed I heard angels singing.

It pleased me, and I nestled down in the pile of blankets and pillows, listening to their music.

It was only after a long while that I came to realise that it wasn’t angels, but magpies. They were sitting on the powerline just outside my bedroom window, deep in song.

I had no idea what time it was. Only that it was early, and dawn was a mere suggestion in a scrubby sky of low cloud and streaky stars.

 

Feathered angels.

What a blessed start to my day.

Here are some rather bedraggled magpies who sound a lot like the ones who sang for me…

Talking to Dragons

“Always speak politely to an enraged dragon.”
~ Steven Brust, Jhereg

 

It’s after 3am. An odd time to be posting a blog. Still. I’m wide awake.

I might as well stay up now so that I can do my morning meditate soon, as is my daily practice.

It’s been one of those nights. The kind of night I’ve not had for a while. I guess Lyme wanted to remind me…

So I’ve lain awake all night, staring at the ceiling, roaming the house, trying whatever remedies I have to tame this pain beast. My body aches. Electricity arches down my limbs, and stabs behind my eyes. It feels as if someone has lodged an ice-pick in my skull and is twisting it violently. Random pain assails me. But it’s okay. I am becoming quite skilled as a Lyme Dragon Whisperer.

I’ve not quite got the dosage right on my latest drugs and herbs yet. Which include, of course, the dreaded Drug Number Four. Once again it’s giving me grief, and yet I know that the pain is bacteria dying, so I’m celebrating even as I want to scream. (I won’t though – too dramatic and it will wake Ben and the dogs!)

I’m hoping to slip back to bed after my meditation. I’m hoping that the meditation will take enough of an edge off, and combined with my massive exhaustion I’ll just fall right asleep.

Fingers crossed, hey?

Meanwhile I’m going to fly the night sky, and send you all some healing. I might as well be useful for something. Anyway, when I’m in that meditation place I am free of my body and its limitations. The pain is gone. It gives delicious respite.

Okay. I’m ready now.

I’ll see you in your dreams. Know that you are loved. xoxo

Image by Mike Rae

Image by Mike Rae

Heartbreakingly Wonderful News

“How strange that the nature of life is change, yet the nature of human beings is to resist change. And how ironic that the difficult times we fear might ruin us are the very ones that can break us open and help us blossom into who we were meant to be.” 
Elizabeth LesserBroken Open: How Difficult Times Can Help Us Grow

 

Would you be surprised if I told you of the bittersweet joy that is my healing journey?

I have experienced deteriorating health since 1984, when I was bitten by a tick during a picnic in Brisbane. For thirty years I have fought to obtain a diagnosis and effective treatment for this invisible illness which has slowly but surely stolen my life.

In January, 2013, I was finally diagnosed with Lyme Disease.

Yesterday I went back to my Lyme doctor to investigate my progress, one year into our aggressive treatment plan which uses antibiotics, herbs and diet. One year on, both my doctor and I needed some kind of tangible evidence that this treatment plan was working.

Since my late teens, when I first became ill, I have tried so many things in my efforts to regain my health. Until last year I’d actually tried EVERYTHING I could think of except antibiotics.

EVERYTHING.

Natural therapies, complimentary therapies, medical specialists, psychology, hypnotherapy, past life regressions, chelation, ozone therapy, detoxing programs, every kind of diet, nutritional supplements, all kinds of machines and energy work, every network marketing product, spiritual healing, positive thinking, meditation, prayer…

Everything.

Three decades of my life, and hundreds of thousands of dollars worth of ‘everything’.

Some of that ‘everything’ kept me alive.

Some of that ‘everything’ even gave me limited improvement for a time. But still, I ended up with lesions in my brain, cardiomyopathy, and on a fast track to my own imminent demise.

A year ago I was dying.

I had my affairs in order. I’d made my will.

At the end of 2012, life, as I knew it and lived it, had diminished to such an extent that I knew there was nothing left to sacrifice. Piece by piece, year by year, I have given up on things. On dreams. On hopes. On normal things. Simple wishes. I kept making choices based on a smaller and smaller view of the world.

I found clever ways to keep existing, and to be grateful for being alive, despite those limitations. I made choices, not based upon the wishes of my heart, but simply based upon what I might cope with, while still managing to shape this small world of mine with meaning. And I told myself that was okay.

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I kept up a running commentary in my head, in my meditations, even in my dreams. I would be okay. I would get through this somehow. All of this misery must be for some higher purpose. One day, I’d tell myself, as I desperately tried to cling to the tattered shreds of my life. One day I would make sure that my life truly did count for something. One day, I would find a way to heal. I hung on and would not let myself face the possibility that it might turn out otherwise. One day I would be well again, I told myself.

No matter how hard it was some days to believe that this could possibly be true…

And then I did find a way. Through a set of divinely synchronistic circumstances, a brave and clever doctor diagnosed me with Lyme. Another brave and clever doctor was prepared to take me on as a patient and treat me. I was prescribed truckloads of antibiotics. Ridiculous amounts that made me more horribly ill, even as they were supposed to be making me better. If I wasn’t herxing, I wasn’t healing, I was told.

It took all I had to hang in there with the treatment. I’m glad I did. Under the care of this kind and compassionate doctor I have made incredible progress.

I still have a long way to go. But the lesions in my brain? Gone. The cardiomyopathy? Resolving. In fact, my heart is on its way to being normal. Do you have any kind of idea how big of a deal that is?

My bloodwork has improved.

I can feel strength returning to my body.

My mind works again. I mean REALLY works. Works so that I can write. Works so that I can function.

I’m not independent yet. I have another two years of drugs ahead of me. I still can’t drive. I’m still in pain. I am still fatigued.

But I am healing. I am alive. And finally my horizons are expanding rather than contracting, after just one year of intensive antibiotic therapy on top of all the other good things I was already doing.

I should be overjoyed.

Please, don’t get me wrong. I am overjoyed. My husband is. My family are.This is the best of news.

It’s just that I am also so very achingly sad right now.

As I stood in the shower on Sunday, Mother’s Day, I cried. Because of Lyme I have miscarried five times. I shall never be a mother. Lyme took that from me, and so much more.

My husband gave up his career to care for me, and it is too late for him to get that career back. The career that was his passion, his pride, his life.

We have both missed out on family time, and time with friends. Our finances and future security have been impacted, and our resources dwindled in my pursuit of health. Over the years we have watched genuine caring doctors, willing to think outside the box for patients like me who had fallen through the cracks, be persecuted and closed down.

Because of Lyme I have given up career paths, education, business opportunities, dreams, relationships. I have said no to so many things. I have been unreliable in my life, and with those I love. I have endured the criticism, judgement and contempt of many, including health professionals, family and friends. I have been in bed, in a quiet dark room, or living small, while life moved on without me.

I will never get those years back. My husband will never get those years back.

I held my Lyme drugs in my hand this morning. A few tiny pills. Pills that are making me well. Pills that could also have given me a whole other life, if I had only taken them earlier. I have recently learned that my government was advised back in 1990 that Lyme disease existed in Australia, and that doctors needed to be educated to better deal with this new threat, which was expected to become more common.

lyme letter

Imagine, if I had been diagnosed back then, at a time when I was already so ill, when my family and I had already suffered so much.

I’m grateful for all that this disease has taught me. I’ve learned humility and compassion. I can honestly say that living with Lyme has grown and shaped me in positive ways. It has forced me to walk a spiritual path, and to explore that path with a dogged determination as I looked for answers.

But in the end, my answer came largely from modern medicine. Alternative medicine and my spiritual practices kept me alive, against all hope. Modern medicine is what is giving me my life back. Antibiotics, anti-microbials, anti-malarials. Tiny little pills.

All that misery, all that pain which my family and I might have been avoided if only I’d been diagnosed earlier and been given those tiny little pills.

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For all of you dealing with Lyme and its co-infections, I urge you not to give up. Healing is possible. I am healing. You can too. Something in the mix will work for you, as it has for me.

This bittersweet symphony that is life is still beautiful to me, and I am grateful beyond words to be given a way back to health.

I am also grateful with everything that I am for all of you who have encouraged and supported me, who have sent me messages and cards and gifts that were often the ONLY bright moment in the darkest of my days. You deserve credit too, for keeping me alive and helping me to hang in there. Thank you.

Yesterday as much as I celebrated this glorious victory, this incredible come-back in the fight to become well, I mourned my losses, and grieved the life I gave up on the way to becoming who I am. I know that there is more loss there yet to be acknowledged. I know that grief can tap me on the shoulder, and cut me off at the knees when I least expect it. That’s okay. It’s part of my healing process too.

Today I am stepping forward with optimism, and renewed purpose. My life matters. I am here for a reason. In stripping so much of my life away I have come to know my core, my essence, and I know this next part of my journey is to embrace that fully.

I love that I am healing. I love that there is still time for me, and that I will be well enough to use that time to a greater purpose.

My progress is heartbreakingly wonderful news.

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Some useful links:

Lyme Disease Association of Australia

Karl McManus Foundation Australia

Lyme Disease Association, Inc United States

The Canadian Lyme Disease Foundation

Catching My Breath

Image from ScienceLakes

Image from ScienceLakes

“Breath is the bridge which connects life to consciousness, which unites your body to your thoughts. Whenever your mind becomes scattered, use your breath as the means to take hold of your mind again.” 
~ Thích Nhất Hạnh, The Miracle of Mindfulness: An Introduction to the Practice of Meditation

 

The past few days have been a bumpier ride than I had expected. I’m off my Lyme drugs while I get all my various tests done, and I’d hoped it would be a picnic.

I was wrong.

Some of the symptoms I thought I’d done with came back with a vengeance. The severe pain I endured last week abated, only to be replaced with a different kind of pain.

Meditation. That’s what’s gotten me through. Again. Thank goodness for my daily practice, for that life-saving place of calm and peace.

I know this will all ease eventually, if I just stick with the treatment protocol. In fact, I already feel better than I did a few days ago.

Problem is, I don’t ever get a proper break from Lyme. I can’t take the weekend off from being in my body. This is the poor broken body I’ve been living in for years. I love it, and I’m grateful for it, but sometimes it all gets too much and I wish I could run away and be someone else for a few days, or me, but in another better-working body.

That’s the truth of it.

But we all feel like that sometimes, don’t we?

One thing I know for sure – meditation helps.

Here are a few guided meditations I recorded earlier. Perhaps you might find them helpful for you right now. Follow the post links to access the recordings:

  1. ♥ Guided Meditation for healing Inflammation and Dis-ease
  2. Bee Breath Meditation for reducing stress and opening and healing the Throat Chakra
  3. Tibetan Singing Bowl Healing Meditation
  4. Guided Meditation for Emotional Support

Know that you’re in my thoughts, prayers and daily meditations,

I’m wishing you peace in your heart today.

♥ Nicole xx

And if you want to know more about Lyme, this terrific documentary, Under Our Skin, is a great place to start. It’s movie length, but well worth it. That’s my life, people. That’s my life…

My Sweet Poison

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“Faith is walking face-first and full-speed into the dark. If we truly knew all the answers in advance as to the meaning of life and the nature of God and the destiny of our souls, our belief would not be a leap of faith and it would not be a courageous act of humanity; it would just be… a prudent insurance policy.” 
~ Elizabeth Gilbert

“Faith is about doing. You are how you act, not just how you believe.” 
~ Mitch Albom

 

What is there to say if we cannot be honest with each other?

Let me show you something.

Saturday morning. Sitting in a Byron Bay cafe, unbidden tears rolling down my cheeks.  I was there with my ever-patient and supportive husband Ben, who had managed to rouse me from my coma-like state long enough to get me out of pyjamas and into some street clothes that still somehow resembled pyjamas.

So there I was. Weak latte at one elbow, a pile of unread weekend newspapers at the other. Harry the cafe dog lying on my feet, while I drew strength and grounding from his reassuring presence.

These new drugs I am on are a nightmare. I count every day that I must take them. Two weeks, four days to go.

They are my sweet poison. I can literally FEEL them working from just after they enter my body. For the first two weeks I experienced massive body pain, insomnia and complete exhaustion. My brain was numb. I was numb. Couldn’t read. Couldn’t think. Couldn’t connect to anything during the day. Couldn’t sleep at night, when all of that disconnect would dissolve and leave me stuck in this misbehaving body.

I was so not like my usual self. Empty headed. No ideas, no ability to converse or articulate my needs. I would get one good hour, sometimes less, each morning between when I struggled out of bed and when I began the regime of drugs and herbs that are making me well. Thank god for that one sane-making hour. Then it was back to the place of disconnect.

At least in that space of disconnect I was feeling the pain, but often from a distance, during daylight hours anyway. Anyone who has taken Valium or other such drugs will know what I am talking about. If the house had been burning down my thought process would have looked something like this:

‘Oh, look. Flames.’ Observes them licking across the bedroom ceiling. Observes them set the curtains alight. ‘Boy, it’s really taking hold.’ Turns over in bed and readjusts the pillows.

At night my bed was burning, and I was still in it. But this time I knew it, and I couldn’t make it stop…

Image from Sodahead

Image from Sodahead

So after the trauma of no sleep and endless pain Thursday and Friday brought me two straight days and nights of sleep. Sweet sleep. Sleep with rich lucid dreams.

One good thing, though. My brain is waking up and kicking into gear although I don’t yet recognise the landscape.

I wake long enough to drink some water, take some tablets, go to the toilet. All in a shuffling half-awake space, like a turtle breaking the surface for a sip of air before returning to the depths and those crazy seem-real dreams.

It was in one of those cresting moments of wakefulness on Saturday morning when Ben magically transported me down to Byron.

Sitting there at an outdoor table with my coffee, music in the background, soft rain falling and friends stopping to say hello, I was overwhelmed with sensation almost too much to bear.

The muted sunlight seemed too bright. The background music so loud. Conversations washed over the top of me and I struggled to catch those shining bright words one by one in my clumsy fists. By the time I had captured enough and threaded them into some sort of meaningful order the friends were on their way, their questions unanswered, their faces kind and perplexed. Sorry, I want to shout after them.

But already I was forgetting what for.

On Saturday morning I sipped my latte, holding it carefully in both hands as a child would do. I am shaky and weak, and my spatial awareness is awry. I find it challenging to get food or drink neatly to my mouth. I hope no-one I know saw me as I put my breakfast toast in my nostril and fed coffee to my chin.

At meal’s end I insisted on paying, shuffling into the cafe to hand over my money. My balance is poorer than I remember and I lurched forward like a drunk. This was not one of my better plans. Cafe Friends who we met through our mutual dogs, looked up in alarm as they watched me surf on wobbly legs to the counter. They do not know I am ill. I am aware that I am walking like a Thunderbird puppet right now – all jerky clumsiness and startle reflexes. It’s not just my friends who were staring that day.

They whispered to themselves, shocked, and although I would have liked to go over and have a quick chat, assure them I’m okay, that this is just a bad patch on the way to being well, I knew it was too much to explain and anyway, there were so many steps between me and them.

Home again, to pyjama land. But not to sleep. Not yet. Someone had shoved a pitchfork in my skull and they were twisting it for all they’re worth. The pain? Exquisite.

I slept away the rest of Saturday and much of Sunday.

So how is my Monday? If I were a pirate I would make pain walk the plank and feed it into the grasping maw of a giant shark.

Meditation is the only thing that gives my waking hours real relief. Sleep is better. Sleep is pain-free, and my dreams entertain me better than any book or movie. I like to think that while I am sleeping I am also healing. That glorious battles are being fought in my name and that good work is being done. That these wretched bacteria inside me are dying in droves and my cells are bringing out the dead as the meat wagons travel through my veins.

Image from MOCpages

Image from MOCpages

I wish I could feel normal. I would like to be baking something. I would like to be walking my farm or going for a swim, or working on a book. But sleep is clawing at me, and I can feel myself turning to sand beneath those insistent fingers. Am I even awake? Was Saturday’s breakfast real or just a dream?

Please, when I finally wake properly from this, let me have morphed back into myself. Meanwhile, I’ll keep taking my sweet poison. I’m planning to kill all these bacteria before they kill me. It’s the best plan I’ve got, and anyway, I’m winning.

It really is true. That which does not kill me makes me stronger.

So my question to you is this: What medicine do you need right now? Even if it doesn’t taste good, if it’s what you need, chug-a-lug babe! This is our year of making things better.

Bottle of Poison by Julie-Chantal

Bottle of Poison by Julie-Chantal