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. 

Refuge

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School. 


I’ve never been one to need a hard chair and a desk and white board to get me some education ;). The first month I was sick with some weird ‘bronchitis/pneumonia’ (i.e.: precursor to the Full-Blown Lyme Takeover), I watched a heck of a lot of movies, which I believed was the dominion of the sick, and was practically expected of me. I borrowed the complete set of Monty Python Dvd’s from my neighbour, and imagined I could truly laugh away the problems. I could ‘spend’ the time of illness by ignoring the ticking hands of the clock and loose myself in british comedy. That was fun for like, 1 hour. I’ve seen movies where sick kids watch movies all day, which sounds like fun in theory, but honestly, I watched ‘Flashdance’ and ‘The God’s Must be Crazy’ (1 & 2) in one afternoon and it wasn’t as diverting as pop culture has led me to believe. As the credits rolled, I still was lying prone on the couch, my head pounding and the wet in my lungs tickling, making me cough. And I was 6 hours of my life poorer. 

I made a decision when I had to stop going to school in Grade 10 that if I was going to spend this time in my life chasing that elusive dragon of health, I was going to read every damn classic I could lay my hands on. Everything is a tall order, but being 15 I thought it was manageable ;).  I’d had a mental list of ‘fabulous books’ that I wanted to have the time to read, and here was my big chance…I’d run out of excuses. I dreamed of greedily savouring Sommerset Maughn adventures, Tolstoy’s & Dumas’ dramas, dive headlong into the worlds of C.S. Lewis, Wilde, Juvenal, Homer, Margret Atwood, Jules Verne, HG Wells…and why stop at novels? “Leaves of Grass”, the wordsmiths Wordsworth, Keats, T.S. Eliot, Shakespeare, Horace…a world teeming with emotion, poured into words, neat little rows of toy-soldier-letters, infinite patterns. Words. I didn’t need to leave my bed to travel to pastoral England, ride to Tibet, fall in love with Paris, and St. Petersburg, the sea floor, a wardrobe. The future, the past…it was all here. It was waiting for me. 

The further I travelled back in literary time – that is to say, the older books I began to read – I began expanding & redefining my horizons, seeking out global classics. I also found myself combing the e-shelves for religious texts and holy documents from a wide breadth of religions, from the obscure, long dead, and current religions, and some semi-religious philosophies for a healthy balance. The Popul Vuh, teachings of Buddha, Qur’an, Hebrew & New Testament Bibles, Gathas, world ‘Myths’…I began collecting religions the way some people collect rocks. Was a part of me searching for the ‘way’, the answer, the meaning of it all? Honestly, I’m not sure. I’ve yet to find it in one volume, anyway. I’ve come to see the ‘wisdom’ and ‘truth’ as scattered, and global religions as each gathering but a seed from the ‘dandelion of truth’ (work with me here, people. the meaning of the universe is in a dandelion. deal with it.). Not an original deduction by any means, but I felt sure that the overlap of ideas in holy/philosophic works represented some universal truths. I tried ‘god’ – both the uppercase and lowercase variety; plural, infinite, natural, and monotheist  – and it wasn’t for me. 

Oh hi New Year. We meet again.

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(No, please, don’t look at when my last post was. Ah…no I just can’t bear it. )

Oh surprise! A year wow, and I’ve barely had anything to say, which seems so unlike me. I’m going to be honest…I just haven’t been feeling so cherry/chipper this year. Because stuff’s been happening in my body that hasn’t been easy to fix, that has been beyond my control, and that sort of shit pisses me off. I know when I’m on an oral and IV antibiotics, and a bunch of sleeping/pain/nausea pills everyday that it’s basically some mad-chemists soup in my blood stream, and I could spontaneously combust if I stand too close to an open flame, or drink alcohol. That’s been my life from the end of 2008-2012. Let’s call this the ‘Medication’s Supreme Reign’, or the ‘Epoch of Anti-Biotics’, or something rather medieval-sounding like that.

If that was then, 2013 onwards has been the year of things going majorly wrong on what had previously been a very small dose of antibiotics (we’re talking fractional doses, every few days…), and for clarity I shall also name this another epic sounding name, such as the ‘Time of the Morphing Symptoms’, or perhaps, even better, ‘the Years of the Abdomen of Doom’. Basically, this year has revolved around me taking every-decreasing amounts of antibiotics, feeling absolutely awful on small doses, taking even more supplements to counter-balance the bad affects, and through everything, me feeling worse, and then better, and then worse again. This is good, in comparison to my usual trend of going off antibiotics, and getting worse day by day.

Despite so many setbacks, I’ve been getting better. In small ways. In subtle ways. My intestines have made up with my abdomen & brain, and now they are friends again, and my tummy wants to eat all sorts of delicious solid food! Yay!

Most recently (ie: the month of December!), I’ve been feeling super ‘low’ (a feeling I usually associate with the flu, low white blood cells/neutrophils, low thyroid function), and despite lowered blood counts, nothing could perk me up (well, except for chocolate! In between 3 choir concerts (complete with dress rehearsals), and other such seasonal madness, I had doctor appointments, and spent more and more time sleeping (or shall I say, resting? Because really I just lie there pretending I’m asleep, just like I did when I was little and my parents would come check on me. Nothing is changed I guess!). Getting up late. Very late. Even for my regular sick. I knew something was wrong. I knew this much ‘ouch’ had to signal something. My abdomen was feeling fickle too, my pancreas occasionally sending a little ‘SOS’ message after I’d eat fatty foods, a feeling like a knives in my bellybutton as payment. There were many days of non-solid food, or just purees, to appease the pancreatic gods :P. But I digress, as I am wont to do. I’m a wordsmith, and usually find an excess of adjectives and conjunctions in my writing, but even still in has been ages since I’ve written (well, except in my head!)…since I’ve had the energy, or the will to write.

Turns out my PICC line is infected. Oh joy! Oh bliss! Happy Christmas & New Years, Nicole. The good news was, there will be no hospital sleep-overs this year (I mean, it’s only 4+ hours til the new year…surely I can count this year as hospital stay-over-free.). My PICC line has chosen to be very dramatic, and painfully swollen, and most exciting of all….oozing green fluid! Oh boy! That’s a new trick. This PICC is a tank. A beautiful purple and blue silicone tank. It’s been hanging 15 cm outside my body for over 2 years, with NO problems. My previous few picc lines lasted between a few days to 6 months (the latter being the average). So after a dose of IV Rocephin at the ER, I was given oral Keflex to keep the green gunk at bay. Sometimes, a visit to the ER can feel like you’ve gone to a wild party and get to take home a goodie-cum-barf bag from the pharmacy: it’s so noisy in there my head is ringing, a strange alcohol smell clings to me, I feel a little germ-y being in such close proximity to so many people, and usually when we get in the car to go home I’m exhausted, and feeling crappier than when I arrived. And I’m going to need a snack….ASAP.

Day 2 of the oral meds I was feeling much better (not so achy) and I could knit again (I didn’t touch my knitting for a few DAYS if you can imagine the horror of that). Today is the 4th day I think, and my arm goo was cultured to see what sort of lab-experiment is going on in that nasty lump under my skin. Gross. But I’m feeling better. Better than I’ve felt in a month or so. Which tells me this infection has probably been bogging down my immune system for while. I knew I was sick, but I was so sure it was anything but my PICC line. I should have known that this blah feeling was likely after all my Port-o-Cath infection adventures.

The good news is I’m on the mend, I still have my PICC line (but it might get pulled if this Keflex doesn’t work some voodoo antibiotic magic soon!), and I’m feeling crafty once more. Onward, dear friends. I’m headed onward.

xox

(I’m typing so darn quickly because I want to play Scrabble! And Knit! I must be feeling more chipper!!)

Rest & Recharge at the Lake

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sunset on the lake

The sound of nothing couldn’t feel better than after spending so long in Ottawa. We’re at my Aunt and Uncle house on the lake, where it is so peaceful and calm. My Gramma is here too, so it’s one big family gathering.  It’s been forever (like…20 years? that’s forever for me.), since Gramma has been to the lake, which was very special :).

the grass is always greener on the other side of the fence

The drive to the Lake is about 4 hours or so, but it’s a beautiful trip once you get out of the city and into the countryside. Leafy green forest, lakes, fields, farms, and every now and again a small town. You know you’re getting close though, when you pass this beautiful field of horses. It’s so picturesquely pastoral, like they just jumped out of a post card, Mary Poppin’s style. We had a very relaxing time. We did go to the Loch with Gramma and my Mum, a place I have vague memories of from when I was about 4. I remember they being ginormous, which I guess is because I was a smaller person then ;). The sky was a perfect blue with cotton-ball fluffy clouds, which reflected so magnificently into the still waters.

the lochs on a clear day

We went on a long walk in the bustling metropolis of Lakefield :P. So many amazing lakes in this area (it’s called the lake district after all!). We even lucked upon a paved path, so it was easy for me too! I really really wanted to go swimming, and it was probably warm enough, but I’m kind of worn out after Ottawa. I’m going to need a long time to recover. I’m not as exhausted as I thought I would be though, which is the best kind of surprise!

I think we discovered a new mutant squirrel, which looks just like it was dipped in bleach. Hard to believe it’s real, but seriously, this wee half-blonde squirrel looks like it had a bad dye job!

mutant squirrel!
the twins!

Our Time in O-Town

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the peace tower

Every time we try and open our window, a wave of sound blasts in. It’s defining. I didn’t think that was possible, but apparently this is my rude awakening to the woes of city dwelling. There’s been construction at the major intersection stories below us, which somehow filters up to us. Just across the street is the canal, and there always seems to be lots of activity in the city. Traffic in the morning, traffic through til the evening, and then it’s very still, sleeping. All work and no play makes a capital. This is a government town. This is O-Town – Ottawa! not to be confused with ‘Our Town’, the play :P.

outside the historic building where we met Senators and MP’s
a flag? on a government building? wow…how unusual ;)

We’ve been in Ottawa almost two weeks. I’m exhausted. Remember all those other times (well basically every post!) where I said I was tired, that I had had a rough and busy week…okay, well I have a new definition of exhausted, let me leave it there.  It’s hot here, exacerbated by all the cement, and limited greens space. We’ve been spending most of our time in air conditioned offices on the ‘hill’. Apparently, what we were doing was called “lobbying”, but as a semi-American, ‘lobbying’ is a dirty word, so we prefer ‘advocating’ or really I like to think of it as meeting people and sharing stories. We wanted to share with as many MP’s and Senators as possible (and their amazing office staff) my Lyme disease adventure and the difficulty with testing, diagnosis, and treatment for patients across the country. We were hoping to explain why we needed Elizabeth May’s amazing National Lyme Disease Strategy Bill, and to ask for their assistance in passing it.

bright day to roll down the hill!

For those of you who haven’t had the pleasure of visiting Canada’s capital, let me paint you a picture. My vantage point is a good 2 feet lower than most peoples, and let me tell you, from down here in my wheelchair, the hills are steeper, the people move faster, and the buildings are taller ;). I had this fantasy that ‘parliament hill’ was sort of a dramatic term for a gentle slope of ground and that this perception of it being a ‘hill’ came from it’s importance in the eyes of the Canadian people *cynical chuckling*. The most challenging part of our week has been this ‘hil’, and transportation. I have no idea how we could have managed getting down the hill and then to another office (“off campus” as I like to think of it lol) without my Auntie Nancy. She’s just amazing :D. She drove us from our condo to the hill, and to all the offices!!! My Aunt is a vehicular wizard.

reflection of the parliament office building
looking up to the
offices we were in

Most days we had 3-4 meetings scheduled with a Member of Parliament, or Senator. That usually translated to being out from 9:30 am to around 4-5 in the afternoon. Monday to Friday. From 15 minutes to over and hour, everyone was very generous with the little time they had. The number of meetings could suddenly mushroom into 6 meetings, or drop down to 1, depending on how things went in the House of Commons. This is “silly season” on the hill, which means that the government is trying to push through as many of their bills as possible before the parliament session ends for summer break. So most nights the MP’s were in the house til past midnight, and up bright and early the next morning. Votes were called many times in a day, so the MP’s had to skedaddle to the house to ‘yea ‘n nay’ ;).

walking from meeting to meeting
our nations crest…
looks like the perfect
tick habitat!


I was surprised and overwhelmed by the genuine kindness and compassion of all the Member’s of Parliament and their staff. I had no idea what to expect when I walked into their offices. Most of my previous focus on the Members of Parliament had previous been negative: what I didn’t like them doing, what bills I was against, which issues I felt they were ignoring, that sort of thing. I watch question period like it is a Soap Opera, which it kind of is. I’d rarely seen MP’s interacting outside of the House of Commons, a place which I’ve come to see as an inflammatory, negative room, in need of a major change.

my amazing mother pushed me all over the place!

Most of the MP’s & Senators were surprised to hear how much trouble Lyme disease patients had been having getting diagnosed and treated. Some had met constituents with Lyme disease, which clearly had a huge impact on their approach to this issue. For those of you who have met your MP, know that your story impacted them greatly, and they were upset, and that they still wanted to change things. A few had even had family members or close friends affected by the disease, which made them even more eager to help.

Overwhelmingly, the message we heard from every MP and Senator was that they felt sure this bill could pass. That it would receive huge support in the house. I know what you’re thinking: “Politicians will tell you anything to get you out the door…”, right? I’d like to think my mum and I’s B.S.-otomer is pretty well tuned and frequently used, and what struck us both, after each and every meeting, was the genuine desire to help. The energy in every office was amazing, from the passionate interns and enthusiastic staff and members who do SO much work.

hopefully Elizabeth May’s bill will come up for debate in the Fall!

Victory dances in the elevator. High Fives. Excitedly recounting our newest meeting stories to Nancy. Each meeting left us more and more enthusiastic and excited to be on the hill.  More sure that this bill would be the beginning, that that changes could follow. It was exhilarating! It could also be the sleep deprivation which makes everything so exciting, but still…what a fortnight! I’m really optimistic that this bill could be passed with full support in the House of Commons, and be on it’s way to the Senate before we know it! Have you met with your MP?  I’m going to be sharing what we spoke to our MP’s about soon enough, so stay tuned :).

stained glass window of the war memorial,
a very peaceful and reverent place
gold leaved ceiling

We did get to do some fun things on the weekend, and in between meetings! We toured many parts of the parliament buildings, but the Peace Tower, and war memorial were two of the most amazing. The history there is tangible…it’s in the walls, and the carvings, the placards and documents. The staff were so kind and helpful…accessibility in such old buildings is a nightmare! Whenever a meeting was cancelled, and we had another meeting afterwards, I’d try to wrangle and quick look at some amazing part of the building. Although the Parliament building we were in was rebuilt after a serious fire in the early 20th century, the architecture is majestic and the walls cool to the touch. Even the rickety elevators are carved and elegant. It must be pretty inspiring to come to work every day here!

We also got to spend time with my cousin Amy, who I’ve always wanted to visit in O-Town. My aunt, mum, Amy , her boyfriend Nick and I got out of the city to visit a picturesque town called ‘Wakefield’. It was so peaceful, and quiet after being in the city for so long. We had such an amazing afternoon, on a beautiful overcast day. I had to do so much thinking and talking in on the hill, which was so draining for me, so it was such a relief to have a fun day, where we could be silly and goof off and relax!

covered bridge in Wakefield with my cousin