Insomnia is a Dragon.

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The night time holds a strange power over me. Not knowing if I will spend hours lying motionless, in turns reading; knitting; meditating; staring at the inside of my eyelids – or sleeping. When my head hits the pillow it sometimes feels like I am playing a game of chance, and I know in my heart that try as I can to boost my odds, sometimes I will loose. And I’m learning to embrace this roulette with courage and acceptance. For perhaps this falls under the category of “things I cannot change”.

Thank goodness for the sunrise. For a new day beginning just when you didn’t think the blackness of night would end. For mornings and the afternoons that follow, and for the promise they bring.

I have been sleeping much better since my last few treatments at the Hansa Clinic in Kansas [And I’m *so* grateful. . Why? No idea. Why did the dozen sleeping pills I’ve tried not work, or have the reverse affect? Why can I mediate for 8 hours, and not slip into sleep? Why can I stay awake for days and still be alert? Wouldn’t it be nice if the answer was I’m actually a Vampire, and I’ve replaced a need for sleep with a need for blood? Hold on, no … that would be awful. I’m a vegan. …

I no longer wish to be a vampire. Let it be struck from the records.

It still takes me what feels like an eternity to fall asleep, but most night it happens. A few hours feels delicious. Versus not sleeping at all several days a week, most nights I do catch a few winks. But it makes me crave more. I want to keep sleeping! It’s been so long since I’ve slept well that I feel the need to catch up, which apparently isn’t possible, but my brain doesn’t know that. It just wants more of that awesomeness. It’s hard to get up. But the sunlight is calling. And I answer.

I started this post at night, sprinkled a few words in the afternoon, and here I am again, another night. It’s a different perspective. At night, there is a sense of almost dread, exhausted by the uncertainty. And then during the afternoon, the day is so full of wonder. It’s waiting to be unrolled and for all the corners of time to be crept into. So full of magic and light and clouds and breaths.

Insomnia is a dragon-like beast that soars into evenings, leaving the umbra of it’s wings back-lit against the stillness. Did you see it’s scale flash as the film credits rolls?  The cool shadow as you brushed your teeth. It flickers just out of sight until you clamber into pajamas and sheets.

And then I try to face the night with my eyes on the  beauty of moonrise, and brilliant sunrise that is promised to follow.

Oh Hai.

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Hi guys. I know, long time no talk. I feel a little awkward writing this, like when you run for the first time after taking a long break. It takes a little while to warm up, to remember the way words sound coming out of your mind with a click of keys. I keep hitting the backspace button…which is something I abhor. As you can probably tell. I’m a ‘stream of consciousness’ kind of girl. I don’t really know how to fill you in on all the things that have been happening in my life, or to explain why I stopped writing for awhile.

You know how when you’re reading a book, and you get an inkling as to where the story is heading. Foreshadowing. Or maybe you’re a hopeless romantic and you hope the girl ends up with the guy in the end, and the run off into the sunset, even though this is a post-apocalyptic zombie novel, and it’s looking like 90% likely that the said boy is possibly undergoing zombification, and you know in your heart it might not end that way. But you keep reading anyway. Hoping the ending would be satisfying, even if it turned out differently?

Writing about things that happen to you is kind of like that. But there are less zombies in my life, which I’m not sure is helping ;). I started this blog in 2008, when I needed something to keep me moving forward. That thing was words, that thing was things I didn’t remember doing, that thing was sharing all the myriad of wonders and pains and progress and fashioning all of that into hope. I wanted to be able to keep writing, and one day, I’d have a happy ending. I know how that ending will look. I see it so clearly. It ends with me quite literally walking off into the sunset, with health, with hope, and a future full of possibilities. So far I’m looking at 2/4, so not too shabby. But to be honest, this past year, which shall henceforth be known as the “year of the loud silence”, I was so ready for this chapter of my life to be over. I wanted to write a new story, a story about a girl going to university, and seeing the world, and taking up fucking jogging or whatever the kool kids are doing these days (okay, I know it’s not jogging…but I digress).

I wanted to be better the day I got sick. And the day after that. And every day for the past *8* years (oh, fuck. I haven’t written that out before. that’s scary).

When life throws you a curve ball, sometimes you have to shout “PLOT TWIST” and keep moving on. In an entirely new direction

So that’s why I’m writing again. Because I’m getting better, my body is taking it’s sweet time. It’s time for a change in perspective.

To stand on my shoulders, and look backwards, and stare through walls, and shake jars filled with wishes.

And now I have exactly 0 clues as to how I’m going to explain what has been happening. Sometimes a long intro of rambling helps but, nope. Okay, deep breath.

My dad has cancer.

Fuck.

I hate typing that. I hate the way those words go in the same sentence. They don’t belong. The way the present tense links my father to another terrible disease. On top of Lyme disease and other fun things like that. And because my father doesn’t do things by halves, he has two kinds of cancer that don’t really go together, like orange stripes and teal polka dots on the same bow tie [although, come to think of it, my quirky father just might think those patterns go swimmingly. you can see where I get my aesthetic from ;)]. I hate watching him suffer. The man has never taken a sick day from work in his life before this. I didn’t understand how terrible it is for my parents to watch me be so sick. I know now.

As usual, it took forever for him to be diagnosed. This seems to be a theme that’s developing. He was in hospital for 2 months, where amazing oncology nurses cared for him, and almost magically brought down the swelling in his leg, removed water from on his lungs, and removed part (all?) of the tumour on his calf. He’s home now, doing a better, and going in for round 4 of chemo later this week. There is wonderful supports in place for people who have cancer, so thankfully he’s being taken care of pretty well. Like the witch in Hansel and Gretel, I’m trying to fatten him up by cooking all sorts of yummy things – although we’re still working on the candy house. We’ve tried many gingerbread recipes, and none have yet been a satisfactory replacement for drywall ;).

I have 13% battery life here, and I know you all are going to think this is a total cop-out, but I think I’m going to need to explain about what I’ve done and where I’ve been in another post. I set out with the best of intentions to squeeze much amazingness into one post. I didn’t quite manage. Wasn’t from lack of trying. Zombies and gingerbread men and plot twists kept getting in the way…you see what I have to deal with!? C’est dans la lune!

The highlights? Singing in an amazing Young Adult choir. Going to the Hansa clinic (in Kansas!) for treatment. Doing my part to help Elizabeth May’s Lyme disease bill pass. Joining in the 25,000 Tuques project for refugees coming to Canada. Progressing to floor yoga! Cracking the perfect gluten-free vegan bread. Starting a shop for my hand-carded batts on Etsy. Knitting socks. Many socks. Visiting Finnerty Gardens in every season. Reading so many books, and trying to check out all the material at the library (I’m doing pretty well so far.). Preparing for my grade 9 piano exam, in which I will slay some Mozart, Bach and Debussy music. Connecting with amazing humans. [Whoa. This list is making me feel so grateful right now <3.]

I’ve been very exhausted lately. I know, shocking, right, but this is different. The kind of tired where breathing sometimes feels like quite enough to be doing for one day. Where your migraine-addled mind slows, and thoughts come in puffs of clouds, that vanish when you try to hard. And sometimes you say “Fuck it” and do everything even though your arms feel like they are going to fall off and you need to rest during the remains day. I cut back on some more strong pain meds, and surprise, wouldn’t you know, I’m in more pain now which is also exhausting, but the pain is lessening, for which I am so grateful.

But I’ve learned this year that I am stronger.  Stronger than the things that try to weaken me. Stronger than I knew. I learned I can take a punch; a victory; a set back; courage, and get back up and do it all again.

Get knocked down 7 times, get up 8.

Spinach Pakoras with Raita & Tamarind Sauce ~ gluten-free, vegan

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Deliciously simple appetizer (who am I kidding…I eat this as a meal!), pakoras are quick and easy to throw together with simple ingredients and minimal work, particularly if you use a food processor. It’s a very forgiving recipe, thankfully! Feel free to experiment with spices…I used ones had around but the traditional carom seeds would be a welcome addition, but something I don’t routinely have on hand. You won’t believe that this recipe is entirely free of animal products, and gluten! I am a huge fan of pakoras, but these tasted even better than the restaurant. If you only make one dipping sauce, let it be the raita I improvised. I haven’t had it in so long, because usually it’s dairy based, but my dairy-eating mum thought it was delicious, and actually we had to make more in-between pakora batches!

omnomnom

omnomnom

I realized after chopping the onions and spinach that we didn’t have an chickpea flour, and proceeded to panic! I first tried grinding dried chickpeas in the spice grinder, which almost broke the machine (don’t try that at home!). In desperation, I ground up some orange lentils into flour, and crossed my fingers. The result was an even more flavourful pakora, with tons of protein and a beautiful orange color. I don’t think I’ll make them with besan (chickpea flour!) again, and hope to experiment with other lentils and vegetable combinations (pumpkin? Sweet potato? Green lentils? Black lentils and cauliflower? Oh my!)

Spinach Pakora Ingredients – inspired by IndianAsApplePie’s recipe
2 cups packed, chopped spinach
1 medium onion, diced (1 cup)
2-inch piece ginger, peeled and grated/minced
4-6 cloves of garlic, finely chopped
1 jalapeño or Serrano, de-seeded
1 cup orange lentil flour (instructions below, or sub chickpea flour (besan) )
1/2 teaspoon sea salt
1 teaspoon chile powder or cayenne
½ teaspoon turmeric powder
1 heaping teaspoon whole cumin seeds
1/2 teaspoon garam masala, opt.
1/2 teaspoon coriander powder
1/2 teaspoon egg replacer, opt. (Ground flax could be a good sub)
½ cup plus 1 tablespoon warm water
oil for frying (coconut oil is perfect)

1. Mix spinach, chopped onion, ginger, garlic, and jalapeño in a separate bowl. Place aside. (*labor saving tip: I use the food processor to chop all 5 ingredients, adding the spinach, last and just pulsing*)
2. Grind orange lentils in a spice or coffee grinder until a fine flour (there will be some mealy bits). Measure out a cup. Add spices and egg replacer to lentil flour.
3. Add warm water and stir until forms a thick paste. It shouldn’t be too watery.

pakora mixture, ready to be fried

pakora mixture, ready to be fried

4. Refrigerate while you make the sauces (see below). This helps them firm up before frying or baking.
5. Add 2 tablespoons of oil to a frying pan and on medium heat. Wait until the pan is nice and hot, and then drop tablespoon-sized (we like them smaller and crispy!) dollops of the pakora mixture into the pan. Let fry until they are crisp on the bottom, then flip ( you made need to add more oil ).
6. Pat dry on paper towel before serving.

Quick Raita Dipping Sauce – you’ll probably want to double this recipe, right off the bat. it’s mad tasty!!!! It’d be great to dip veggies or crackers in too.

this raita is heaven. pure heaven. i bet you no one would guess it's made with tofu...

this raita is heaven. pure heaven. i bet you no one would guess it’s made with tofu…

1 cup vegan sour cream ( recipe follows), or vegan yoghurt
4-5 green onions, chopped
4 inches of diced English cucumber ( if using another kind, dig out seeds first)
4 tablespoons chopped cilantro, or a generous handful
1/2 teaspoon cumin seeds
Fresh black pepper

1. Mix all ingredients and voila. Magic. The sauce should be chunky and very green! Add more cucumber to taste – and believe me, you’ll want to taste it!

Tofu Sour Cream
1.5 cups silken tofu, drained/crumbled (one box)
1 tablespoon lemon juice
2 teaspoon brown rice vinegar
1/2 teaspoon brown rice syrup, agave, or honey
1/2 tsp apple cider vinegar
1/4 tsp sea salt

1. Blend in food processor or feisty blender until smooth and creamy.

Tasty Tamarind Dipping Sauce
Inspired by Dassana Amit recipe for saunth chutney on VegRecipesIfIndia blog

tangy tamarind sauce

tangy tamarind sauce

1/4-1/3 cup seedless tamarind
1 and ¾ cups boiling water
½ tsp cumin seeds
1 tsp ginger powder
¼ tsp red chili powder, or cayenne
4 tablespoons coconut palm sugar
1 tsp oil, I love coconut oil
Salt, to taste
Instructions
1. Soak dried tamarind in water for 30 minutes. Break up mixture with fork. Better yet, soak overnight if you have time/patience.
2. Time to squeeze out the juice, and discard the pulp. Strain the mixture in a sieve, and press out all the liquid with a fork, or squeeze the pulp from the tamarind with your fingers (this is the fun, messy option!)
3. Set aside the tamarind liquid.
4. Heat coconut oil in pan.
5. Lower heat, and add the cumin seeds and let them crackle, for 30 seconds.
6. Add other spices. Stir. Add tamarind.
7. Cook 2-3 minutes, then add sugar.
8. Cook for 5-10 minutes, until the sauce thickens.
9. Cool and refrigerate. Can keep for several months.

Put all of these fabulous elements together and you have the plate of perfection. Happy Solstice, beautiful people.

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Withdrawal ~ A life Affirming Experience

still smiling, after 53 hours of withdrawal.
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Whoa. Hold the phone. Did I just type that? A part of me – the part most closely connected to today’s symptoms of feverishness, anxiety, nausea, convulsions – just rolled it’s eyes. And last week, my title would have been radically different. Which is why I waited 3 weeks after my last dose of dilaudid to write this. That’s right. It’s been 3 weeks. *fistpump*.

I’ve been on oral hydromorphone (dilaudid), a narcotic pain killer, for several years. It works, kind of, but not without side effects (forgetting to breathe tops my list!). I used it for “break-through pain” during the day, like many people. I was on a tiny dose, and figured getting off of it would be “easy”. Oh silly, past Nicole!

First, let’s take a trip down memory lane. I’d been tapering off the dilaudid for over a year. And this year has been *brutal* in ways that, to me, have felt utterly un-Lyme-ish. I’m preeetttyyyy used to feeling like crap, and in pain everyday, 24/7, so it’s usually easy to pinpoint when something else is going on. For some reason this year a number of unusual (for me), unexplained symptoms have been cramping my style regularly. Some of these fun things include:

– hot/cold sweats

-intense abdominal pain

-involuntary muscle tensing/stretching

-shaking, chattering teeth

-mild depression (took getting off it to realize this!)

-utter exhaustion / complete insomnia [staying awake for 2-6 days at a time:(]

-complete loss of appetite

And et cetera. I know. I thought too that these problems sound like my ‘usual’ sick self, but something felt off. I felt off. I felt strange.

Naturally, these symptoms intensified the closer I got to eliminating the hydromorphone. Until sh!t really went crazy. My mother didn’t tell me I was completely off it until 2 days in. The first few days and nights were awful. Hell. Excruciating convulsions wracked my body every 5-15 seconds, making sleep out of the question. Intense nausea, head pressure, bone pain, my body jumping from hot to cold…the list goes on an on. I was completely uninterested in food or drink, and began to unwillingly loose weight, weakening my body still further. For the first few days, I mostly stayed in bed, not even knitting *gasp*, only able to get up for an hour or two at a time before by body would beg for me to return to bed. I could not believe how intense the experience was.

My amazing Mum held my hand for hours as I twisted with painful convulsions, my body freezing, stretching, pulling-apart from the inside out. She repeated the mantra, “It’s going to be okay”, and I would say, “I know”. And somehow, amazingly I did. I had this overwhelming feeling that everything was going to be fine. Better than fine. It was excruciating, challenging, utterly mind-rendingly exhausting, but I knew I was going to be just fine, in every sense of the word. I knew it was going to happen, and it would keep happening until it was over, and everything would be right again. Until my body and brain adjusted to life without Hydromorphone. I was utterly at peace with the entire experience, which struck me as a bit strange, but the calm was welcoming. For the past year, I’ve struggled returning to the place of inner calm and peace I had perpetually occupied. It came to me only fleetingly, and left me feeling anxious, agitated, and restless. And somehow, it had found me in the darkest time. I couldn’t meditate during the withdrawal experience, and oddly, relaxing and calming my brain seemed to intensify the withdrawal symptoms. So I focused mindfully on other things. A book, music. I’ve never gotten that far through my “Classical Music Playlist” (it has about 2,000 songs. don’t judge me :P!), but  listening to the soaring “Cypresses” by Dvořák, wild landscapes of Sibelius and Copeland, the unabashed liberation of Ravel’s “Miroirs“, the willful wanderings of Satie’s “Gnossienne” and many more for endless hours gave me strength and a welcome distraction. The pain could pass in swirl of musical colors, I, adrift.

As I said, I wasn’t prepared for the intensity of the experience. The sheer scale of pain and misery that your body and mind can create. The pain was so overwhelming, all-consuming, and I had to forcibly make room for living. After 12 hours of spasming pain, I’d arise, whip across my curtains, and look out at the sun. I’d made it. Another day. More hours to check off. I’d ask my mum for an update on how many hours I’d been without hydromorphone. And grin from ear to ear.

There is no respite. No break for the first 72 hours. You simply must enure. Sorrryyyyyyy. Sometimes life’s like that. But I made it. And if you are facing a similar experience, be prepared. Be ready. It freakin sucks. But you’ll survive, you’ll only feel life you’re dying.

 

That Scale from 1-10

sometimes vectors of diseases are so stinkin' cute! it made my day seeing this guy, even though I was feeling so awful.
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Oh *Cringe* it’s been way too long since I’ve written. It’s hard sometimes to talk about the bad stuff when you feel like it won’t end anytime soon. I’ve been having a rough few months to put it mildly and we can’t seem to figure out what’s going on. I think I might have been in withdrawal from the pain meds we’re shuffling around, or perhaps majorly herxing from the medical cannabis I’ve started using -which is really really REALLY helping everything. Except for when I herx. But I digress. I ended up in the ER a few weeks ago with severe abdominal pain (thought my appendix burst or something!) and forgetting to breathe and a whole bunch of weird suff which was possibly from withdrawal or slight overdose, which they didn’t figure out at the ER. I wrote this poem during a full night of strange seizure, excruciating involuntary movement, and knife-like abdominal pain.

Scale from 1-10

Pain in the abdomen that feel like

a car alarm going off,

smoke detector blaring,

volcanic,

ambulance wailing,

and I,

stranded.

In my house. In my walls.

My body, weary travel companion;

Undetachable from this.

Unreachable.

onetotenonetoten

one to ten

What is your pain like on

a scale

of

one

to

ten?

But the pain dosen’t speak

It doesn’t do roll call

and count the ways it is itself.

It leads to the same conclusion:

too much.

A number a number

no waiting room number

just my identifying health care number

which for security reasons I shall not inscribe here

but

it’s 9 digits long, and roughly speaking

marks my number

on that scale

you weigh my suffering in.

Pain, unaccountable.

And I am still here in this darkening place

while ignorant armies

clash, crush, burn, stab,

in the early morning night.

Undefinable

Unattachable

Undetachable

Unreachable. Yes.

and

undefeatable.

 

So “Let’s Talk About Lyme”…

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The “Let’s Talk About Lyme” awareness event was a huge success, and there was standing room only in the Community center! I met so many incredible patients, physicians and community members, although it was hard to move around the packed house (no complaints!). I learned so much from the incredible speakers, particularly Gwen Barlee’s detailed presentation on the Lyme disease situation in Canada, and the other Lyme patients & families whose powerful stories touched the audience and brought home why we were all there. It’s hard to get that many people with chronic illnesses in one place, so Lyme disease awareness events are usually have a ‘family reunion’ feel to them :).

I’m the one in the green speaking, with the fabulous Gwen Barlee at the podium
I feel our personal stories are the most powerful tool in a patient-cum-activist’s arsenal. You can read about how Lyme disease in on the rise and that there are all these awful symptoms, but it’s much easier to imagine yourself in a patients place, than hear faceless statistics. I’d encourage everyone to share their story with everyone you can; your words just might save a life. Below is a copy of the speech I gave at the event (just imagine me talking eagerly with an exclamation point after pretty much every sentence, and it’ll be like you’re right there!)

“Let’s Talk About Lyme” May 10, 2014 @ Fairfield Community Center Welcome everyone. My name is Nicole Bottles, and I’m 21. When I became mysteriously ill at 15, I imagined I would keep going to specialists, peeling back layers of symptoms, until they discovered what was wrong, and I’d get back to my ‘usual’ life; Dr. House style. That was 7 years ago, and I still am waiting for a diagnosis in Canada.  After going downhill daily, in 2008 we turned to our southern neighbors for help and saved my life. I learned I not only had Lyme disease, but 3 other life-threatening tick-borne infections. 

giant clay ticks to make with kids!

I was a hobbit on an epic quest; to regain my health, of course, but also to ensure no one else suffer from what should have been a simple infection, curable in it’s early stages with $100 of antibiotics. An infection which in it’s late stages has no cure.  Instead we have spent tens-of-thousands of dollars on my on-going treatment. I’ve made great progress with my treatment, but still have a long way to go. As a young girl, I’d always wanted to ‘change the world’, but I had no idea how. I decided to embrace this opportunity in disguise, and “make lyme-aid”. That means educating, and advocating for change, without letting a chronic illness keep me from experiencing all life’s wonderfulness.  For 2 weeks we discussed challenges Lyme patient’s experience with 80 MP’s & Senators in Ottawa. It opened my eyes to the power of legislation, compassion and human connection. Many already knew about Lyme disease, and all quickly understood the gravity of our situation and wanted to help.  Since becoming ill, I’ve wanted to give back to organizations that have helped me immensely.  Channeling my passion for creativity, I’ve been able to financially support the incredible work of CanLyme & the Dr. Murakami Center for Lyme by knitting IV covers and creating original photography cards.  On difficult days, I remind myself “to dwell in possibility”, as Emily Dickinson wrote. On the good ones, I keep moving forward, optimistic that if we believe we have the power to create change, it will happen.  (STAND)  So “Let’s Talk About Lyme”.  Let’s spread the facts.  Let’s engage our politicians.  Let’s keep talking to our doctors.  Let’s keep the conversation alive.  Because the conversation can only stop when Lyme disease is cured, and prevention becomes second nature to all Canadians. ~ *rolls off of pillbox* I am so lucky to have the support and love of friends. I could never thank them enough! One of my best friends, Morri, came to the event and later created this amazing video, sharing what she learned (omg. the gal is a sponge! such accurate information too! high five!), and also how to create a fabulous “Lyme-Look” eyeshadow. So cool. Check it out the video on her Youtube Channel!

Let’s Talk About Lyme ~ Awareness Event

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If you hike, bike, garden, play outdoors with pets or kids, this event is for you!


I’m really pumped to invite you all to our local Lyme Disease Awareness month event: Let’s Talk About Lyme. If you call Victoria, BC, Canada home, or are close by or visiting we would love to share an afternoon of uplifting stories, hope and awareness. This is the event I wish I’d gone to before I got sick! 
We have some amazing speakers lined up (The MP’s Elizabeth May & Murray Rankin, and Jim Wilson of CanLyme will be there! And some seriously cool activists – like Gwen Barlee…and Lyme disease patients. I will be speaking as well!). 


Saturday, May 10th from 12:00 pm- 3:00 pm
At the Fairfield Community Place, 1335 Thurlow Road, Victoria, BC Canada (behind Moss St. Market!)

Invite your friends, family and neighbours and local groups. Check out our Facebook Event, and share and invite to your heart’s content!


Want to help out? We’re looking for volunteers to help set up & take-down, and help with kids craft (we’re making modelling clay ticks! and doing a faux-tick drag for kids…and there is a colouring table…just saying…it’ll be a blast.). If you’d like to help out, please email me for more information @ bitemeback@live.com.



feel free to share the poster with friends, family, neighbours, co-workers…everyone. let’s stay safe this tick season.

Lyme-infected ticks are here on Vancouver Island! Join us for an afternoon awareness & prevention event featuring awesome children’s activities, amazing guest speakers, prevention and awareness booths and videos, and speak with local health care practitioners.


See you on on the 10th of May!


Ps: Visit the Victoria Lyme Disease Awareness & Support Group’s website at: www.LymeVI.ca

It’s A Jungle In There

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My white and red blood cells formed such a large cohort that it’s been decided I’m going to go back on IV antibiotics. Oh joy! Last night we infused 1/16 of a dose (which apparently takes a lot of work to divide properly!), and it was so rough. My liver started throbbing like a subwoofer before the fractional dose had been infused all the way, always a sign of fun times ahead. Signs of ‘fun times while herx-ing’ may this week include: headache, heart palpations, all over throbbing and general pain, severe kidney pain (constant) and stabbing liver pains. Lucky me. I did my first dose of the IV Zithromax last night, and today my abdomen is loudly protesting. My liver have a diva complex, and it thinks that every time it raises a peep it should be heeded and the offending substance promptly removed from your prescription list. We’ll see if we have to take things that far, but hopefully the dynamic duo of liver and kidney pain will calm down enough to try another dose. That way we’ll know for sure. Isn’t this fun guys?!

Sunshine in the Forecast?

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I love Lyme Disease for the little things: you can start a blog post on February 15, and come back to it again more than a week later to find that absolutely everything you wrote about your symptoms has changed so dramatically that you words seem comical in hindsight. The below paragraphs give you an idea of my thoughts of last week… 

If you live in Victoria, I’m actually Joking, with a Capital ‘J’. More torrential showers and driving winds to look forward to. Yay.

But I’m feeling a bit better. Oh dare I say it? I don’t want to tempt the Organ Gods. Because right now my pancreas is feeling pretty chill (And I just ate some almond butter. That’s right. take that, Pancreas.), I’m hoping I won’t have any more kidney-stone showers (play nice now you two), and my stomach doesn’t feel like there’s a hole being burnt in it and no weird heart-burn. :) My hair might still be falling out, and I’m not sleeping BUT. I mean, I’m practically ready to TGIF with a margarita & a voluntary all-night-er (ah…insomnia jokes. never gets old).”

Well my squishy bit’s are okay, but this week it’s been all about infections. Oh boy! No complaints from the abdominal cheap-seats. But the white blood cells are in the top box and enjoying the glory of their multitude. Whiskey tango foxtrot?! Well when my arm started really hurting and green goo began leaking from the site of my PICC line, one supposes an infection brew-eth. The 3 witches from ‘Macbeth’ have nothing on that gunk…I mean a fillet of a fenny snake? eye of newt? toe of frog?… come ON. So last millennia. All I’m saying is Crayola won’t be interested in those colour names. (But if I could just think of the perfect shade for this green goo – it’s certainly an original shade & unique origin – I’d be hired!)

It’s been awhile since my immune system put up a good fight in any sense of the words. My white and sometimes red blood cells & neutrophils are most often low. But since they’re hovering at the high range of normal, in my body that indicates that they’re jedi-fighting off an infection. Boo-ya! The immune system is just way too much fun to personify. I’m feeling crappy, and a little fever-y and shake-y and ache-y, but it’s not catching. 

I think I am getting a sore throat though. Or it’s my picc line poking in my chest. I guess we’ll see. I have been making some amazing raw truffles packed with protein and *almost* sugar free. I’m working on crafting a perfect recipe, so stay tuned ;). 

Ancient Brain

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I’ve never let the pain get in my way. Or the wheels. (Sometimes I feel like a spider, a girl with 2 arms, 2 legs, and 4 wheels equals 8 limbs. Have you seen Monsters Inc? I ‘roll’ by my self like freakin’ Mr. Waternoose.) I do amazing things, and they’re almost bright enough to hide the pain of living, even from me. 


I have been so busy, I actually don’t have time to be sick. Illness is a major inconvenience! Who needs pill breaks and resting and insomnia? I don’t let anything stand between me and living fully, especially not being sick, but it requires a re-evaluation of life, changing the definition to suit your needs. Exchange the cloak of pain for a smile, and put the tension in your back pocket for a time. But like every magic tricks or slight of hand, the reality behind the make-believe can’t be hidden from the magician. 

I can’t figure out the best way to list all the amazing things I’ve been up to without sounding really conceited and irritating. And I can’t figure out a way of talking about the bone pain without feeling like I’m hosting a whiney pity party. Which is why I am writing all this bizarre preamble. I guess. I don’t know. Sometime my fingers take my brain for a walk.

Um…I actually started writing this post because I wanted to talk about the Greek and Roman studies class I was taking at UVIC. See….you can never trust your fingers, because they take you places that your terribly logcial mind would not. Without further ado…I’m auditing a class at UVIC (my 3rd so far!), called ‘Jews and Christians’, which is every bit as rich in primary sources and apocryphal books of the bible(s) as I was hoping! I’ve also been studying latin for the past 1.5 years, and it’s marvellous! I only wish I’d learned it before tackling French and Spanish, and Biology (and music! and literature!), because so many of these words and terms have latin roots. Although the meaning of words have changed sometime during their multi-millennia trek from Latin to English, knowing the root of words help to understand their meaning. Can’t wait to start reading Juvenal’s satires & songs of Horace, but I’m definitely not there yet. 

The teacher of both these classes has the sort of passion for his subject that I was starting to believe was impossible with adults ;). We met Dr. Rowe at a thrift store and started chatting in line about Lyme disease. I learned that he was a professor of Greek and Roman studies at UVIC, and when he asked if I wanted to audit some classes, I was so surprised, and excited. My love of Roman and Greek mythology started at an early age, when a family friend & librarian gave me children’s version of Greek Mythology, ‘In the Morning of the World’. When I grew a bit taller and could reach the top shelves of the library, I found Robert Graves’ Greek Mythology tomes, which are a beautiful rendering of a culture’s complicated myths. I’d wanted to learn more about Greek & Roman philosophy, history, and religion at university, but I never dreamed I’d be able to handle the coursework, or keep up with note taking, or even make it classes. 

Sometimes you can surprise yourself. 

I type (almost) as quickly as someone can speak and am learning to tolerate my robot ‘Bruce’ reading and butchering ancient sources (“Kay-zar” is one of my favorites, for Caesar. Oh Bruce-y.) 

For whatever reason, I can ‘learn’ Latin in the way I just can’t learn any other subject, with the exceptions of Music and Spanish (a different part of my brain? who know!? who cares!!). I still struggle with severe short-term memory impairment, which makes it fun when I know no ones name, or if they know me. So my secret is you treat everyone with kinds and with an open heart, and figure out from their facial cues whether or not they know you. It’s hard for me to think of answers abstractly to Latin grammar questions (I hate & spurn grammar. Could you tell?), but if someone asks me a question and I don’t think about the answer, it is there, waiting for me to express it. I love translating Latin…it feels the same as working out an advanced Suduko puzzle.; you solve little pieces and get a glimmer of how it all goes together, and then all at once you’ve solved the meaning of the sentence, filled in all the numbers.