Archive of ‘Elizabeth May’ category

Both Sides Now

The second day of the conference dawned, sunny and early, and closed with an attitude of hopeful optimism. One of the most interesting experiences at the Lyme Disease Framework Conference today was listening to 4 experts in various fields shed light on progress and problems with Lyme disease testing and diagnosis. This is certainly the ‘hot-button’ topic of the conference, and of the controversy in general, but I came away with pride in the mostly respectful interactions that occurred. A few years ago, the polarizing climate of anger would have made these talk downright impossible. We’ve moved forward as a collective. And that’s encouraging to see. there was so much to digest today, but I feel like after so many years of hitting brick walls, we are finally on the road to change.

It was an extremely productive day but a draining one. Kindly walk past my absurd grammar mistakes and typos. Nothing to see there ;). I am so beyond exhausted, but wanted to throw down a few thoughts before getting up tomorrow to attend the final day, where we will be making extremely important suggestions for the framework.

The conference moderator Mr. Normandeau set the tone by encouraging us “to be hard on the issues and soft on the people”. His summation of the points patients and advocates raised last night when we briefly shared our stories was on point.

opening remarks from Mr. Normandeau

We as a community have every right to be angry, to be furious at the systemic problems and physicians that left so many patients untreated or reeling from misdiagnoses. The conference is not the time to vent that 27+ year anger, but channel those emotions into more productive areas. But today for the most part, we set aside our (surface) anger to focus on the task at hand. It got tense. At one point, Dr. Bowie said during the course of the afternoon that if a certain proposed clinical trial was done, he would “throw a fit”. Many Lyme patients would have had just justifiably thrown a fit over other issues 😉 , but thankfully we mostly kept our collective cool. Dr Maloney responded with a quick comeback:

It was certainly eye-opening to hear “familiar” research cited as against the argument of the persistence of Lyme disease post-treatment, and to hear studies about which I’ve read many articles examining their shortcomings be presented as definitive. I was at first frustrated. The bias was palpable. And then I recalled one of the first lessons I learned in history class; that identifying bias is far from a negative thing; everyone has bias, and it tells us where the author is coming from, and neutrally acknowledging bias helps place their comments in context. When examining information from biased sources (and we’re all biased) it’s key to focus on what the differing points are. Once I reshuffled my thinking, I found I learned a great deal about what we might call the CDC/IDSA stance on Lyme disease.

Judging only from what I heard today, and trying to detach myself from my personal bias of 8+ years of background knowledge, I heard these doctors and researchers express their concerns over efficacy of long-term antibiotics [based on research they believed credible (even though many admitted short-comings in the research, which ranged from data collected at uneven times, small control group, and too small a ‘cohort’)], the side effects, the need for more research and the dangers of diagnosing someone with a disease they may not have. Okay, fair enough concerns. However, if you’re a Lyme patient, you feel a sense of urgency to do something, so you don’t get sicker. I recognize that this isn’t something you can understand until to feel the infection in your bones. I wish the issue of informed consent for treating patients longer had come up. I was confused because of the back-and-forth conflicting information on whether or not Lyme disease needs to be a ‘clinical diagnosis’ or not, and what the criteria would be. Arg.

Their were high points and low points in the day. The audience was rightfully outraged when Dr. Patrick of the BCCDC, in response to a question from an audience member said he didn’t want doctors making a hocus pocus 19th century-style clinical diagnosis. Whatevadafuck that’s supposed to mean. I found it quite shocking, personally.

Without commenting on the genuineness of their surprise, the CDC/IDSA-supportors seemed to be disbelieving that patients with an erythema migrans (or ‘bull’s eye rash’) wouldn’t be given treatment in a doctors office, or were required to do testing first (which all parties agree is very inaccurate in early stages). They seemed surprised when multiple patients shared similar experiences. And made it very very clear that the “guidelines were just guidelines” and even expressed confusion why the Lyme disease community was insinuating that doctors needed to treat them “like they were set in stone”? Is it possible they were unaware that there was at least one doctor in the crowd who’d been forced into retirement because they dared to treat ‘outside the guidelines’, or that there are a whole host of physicians who have closed their practice for similar reasons? Curious-er and curious-er.  It made it clear to me just how critical it is for all stakeholders to come together for this conference; so we can lay all our concerns on the table, and find common ground. Building suggestions for the framework begins tomorrow, and I expect that will be h.e.a.t.e.d.

I swear in the 7 hours I was there, we collectively agreed on things, most importantly that patients are suffering, and it needs to be addressed now. There’s no quick fix, and I came into this knowing and expecting that. We have work ahead of us. The hardest work begins after the Framework is release: getting the Provinces to implement it. But that’s a battle for the future. One bridge at a time.

Depending on my energy, I’ll be tweeting from the conference. You may have noticed my innate wordiness which I battle in every sentence, so you can imagine sticking to 140 characters was a challenge. I’m at @nbandlyme and in case you’re  wanted to join the convo, the hashtag is #lymeconference.

See you all bright and early tomorrow for the culmination of almost 4 years of hard work bringing bill C442, Federal Framework on Lyme Disease Act, into law. Well done, team. Special shout-out to Elizabeth May for making this possible, and giving hope to so many. <3

Oh Hai.

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.


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.

Our Time in O-Town

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

Starting Again

I feel like I’ve medically travelled backwards, and I’m on my first few weeks of IV meds, in Connecticut in the fall of 2008. Thank god I’m not as sick as I was back then (high-five for me for having no seizures or black outs! life is so much less exciting now for everyone else around me hahaha). Every drop of medication makes my head hurt and my chest have this weird feeling kind of like heart-burn, if heart-burn was in your literal heart. I know I’m slurring and tripping over words, the wrong phrases mix themselves together and every now and again the wrong fiddle comes out of my ear (fiddle…word….ear…mouth, same difference! work with me here.). I continually make simple errors, and cannot understand some sentences. I’m dropping out and tuning out (and I’m not even on those kinds of drugs!). I even sent out the complete wrong size DryPRO PICC protector (a cover for your IV line when showering) to a customer, which I still feel dreadful about.

In the past, when I’ve been on the IV drugs and the rest of my brain was acting like melting cheeze, it corresponded to a serious drop in my energy level. So I’d be loony and unable to focus, and stuck on the proverbial couch. Not so this time. Is it all the spirulina I’ve been taking? Maybe. Wait, no, it’d better be, because that stuff don’t taste the best if ya know what I mean. I’m not sure, but I’ve still been acting moderately peppy, even though I haven’t been sleeping well, and have been really busy. Meeting with friends, going for walks (or sojourns into nature involving me being pushed around), knitting, sewing, music, repeat. I’ve been making a sweater for my amazing Mama in luscious red Organic cotton.  A touch of lace, a touch of shaping, my raglan design…all the makings of a fantastic garment!

We’ve been planning the last minute details to our trip to Ottawa too. We’ll be meeting with as many MP’s as will see us, so I’ll be needing all my stores of peppiness in the coming weeks. Hopefully, we’ll be able to convince the MP’s we meet to vote ‘Yes!’ with a capital Y and an exclamation point on Elizabeth May’s private members bill on creating a “National Lyme Disease Strategy“. My fellow Canadians, have you talked to your MP about voting ‘yes’? I urge you to share your story (or the story of a friend/family member with Lyme disease) with your MP’s and make it clear to them that you support this bill, and change on this issue. There are undoubtably constituents in every riding across the country with Lyme disease, and if just a fraction of us visit our MP’s and even more people write to their Members of Parliament, we’ll be well on our way to creating change for all Canadians, present and future, battling Lyme Disease.

World Lyme Day Celebrations: Victoria BC

May 11th was the first international World Lyme Day Celebration! There were rallies in over 25 countries, including Victoria, BC (we’re the capital of the province!). There were so many people there, who’d come from as far away as the interior BC just to be at this event. It was so amazing to meet all the Lymies (people with Lyme) that’d I’d only ever communicated with electronically! Elizabeth May, Lana Popham, Murray Rankin, and David Cubberly spoke about the changes their trying to create, and Emily (who’s dad is very sick), Avery & Shannon(mother/daughter), and I spoke about how Lyme impacted our lives, and about having Lyme disease in Canada. Many other patients got to share their stories, poems and experiences…it was a very cool experience for us all. 

Lyme Disease patients, and their friends and family

There was such a positive energy running through the group…it feels like we are all coming together to create positive change, which is so cool! Here’s my speech, below:

Thank you so much for being here today. When I realized I was too sick to walk, I thought I’d be in a wheelchair for a few weeks, until we figured out my ‘mystery illness’. 5 years of therapy later, I’m still rolling along. Breathing problems and increased headaches began in grade 8, escalating gradually ’til in 2008 I began feeling fatigued, and experiencing worsening joint pain, nausea, confusion, memory problems and all over body pain. We made the rounds to the offices of many specialists, none of whom could figure out why I went from being a healthy, active teenager to a girl barely able to walk or function. I was tested and retested for what felt like everything. In desperation, my mum researched what could possibly be ailing me. Turns out I had most of the classic symptoms of Lyme disease, and yet each doctor we went to assured us I couldn’t have Lyme.  Like so many other Canadians, I had a negative test result, which for my physicians completely ruled out Lyme disease. Versus making a clinical diagnosis, most doctors rely on a flawed lab test to diagnose Lyme disease. As a direct result of this failure to diagnose me, I’ve been fighting for my life for the past 5 years. If someone is diagnosed and treated immediately, just a few weeks of antibiotics should see them returned to health. Sadly, my story is like thousands of others across the country, who trusted the medical system to get to the bottom of what was ailing us, and were let down. I was one of the lucky ones who was able to seek the guidance of four leading experts in the US. Our family home was sold, bank accounts and lifesavings drained. Friends, family and strangers donated at fundraisers in order to fund my treatment outside the country, which isn’t covered by our provincial health care plan. To this day I still have no diagnosis in Canada, and I continue to be treated in the US.

I spoke and attended the 2009 rally on these same steps. I can’t help asking myself what’s changed in 4 years? When  first became ill, most people we met had no idea what ‘Lyme Disease’ was. Now when we meet people, most everyone has heard of Lyme disease, even if they didn’t know it could be so debilitating. This broader awareness is thanks to us; the patients and their families and friends, the reporters who’ve featured stories of the lives changed by this infection, the politics surrounding it and the politicians fighting for change, like those here today. 

When I found out I had Lyme Disease in 2008, I made myself a promise that I would do everything in my power to prevent other people from having to go through what I did. 
I envision a day when the diagnosis of Lyme Disease evolves to the point that a patient with a tick bite would be preemptively treated, instead of being told it was probably a spider bite, or to come back if they developed symptoms. 
I envision a day when doctors receive the education critical to clinically diagnose Lyme Disease, versus relying on the flawed testing available in Canada. 
I envision a day when doctors are free to treat patients as they see fit, and not be limited by outdated treatment “guidelines”. We have seen too many doctors driven out of practice.
 I envision a day when Lyme Disease would be explored as a possible diagnosis long before the patient was left with a ‘mystery disease’ label. 

What Lyme patients need now is compassion and assistance, not dismissal and denial. There is an opportunity, with the National Lyme Disease Strategy Bill, for medical professionals, patients, and advocates to have a crucial conversation, address issues and formulate concrete solutions. I am asking our elected officials to debate this issue and begin creating solutions that would benefit all Canadians. We patients are too sick to create these changes on our own, and we need your help. 

I imagine a time when a simple, reliable test and effective treatment for Lyme Disease will be available for all Canadians. I envision a future where Lyme disease is no big deal, and never allowed to become a chronic, debilitating infection, as has happened to so many. 

The future of Lyme disease and tick borne infections in Canada is at a turning point. Behind us, we have decades of suffering and a lack of knowledge. Ahead of us, global warming and human encroachment of wildlife habitat will lead to an explosion of ticks and Lyme disease outbreaks. 

We’ve got a lot of work to do, and a mission to drive us and hope to keep fighting for. Let’s get started! ~

May is Lyme Disease awareness month, and ticks are in the nymphal stage at the moment, and are very small, and almost impossible to see when they are on your body (or biting you). This is the time to investigate natural bug repellants (I use TickTock‘s tick repellant), to tuck your pants into your socks (I know…so sexy!) and to wear light colored clothing when you’re outside. Stay away from tall grass, keep to the middle of the path, and check your pets, yourself and kids for ticks regularly!
We are going to Ottawa later in the month to speak to as many MP’s (Members of Parliament…like Congressmen, for you Americans) as possible about supporting Elizabeth May’s Lyme Disease Strategy Bill. It’s going to be a very busy few weeks, but I’m excited about this opportunity. Most of my extended family lives in Ontario, so we will be visiting with them too. Yay!

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