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!

Mongolian BBQ Tempeh: GF Vegan, Allergenless Opt

Mongolian Tempeh a la Quinoa

I am so delighted to share one of the tastiest Vegan recipes I have ever eaten! It's a vegan twist on the classic Mongolian BBQ Beef= Mongolian Tempeh stir fry. Now for all of you who just shut off when I said the word 'vegan', I want to assure this isn't anything like that bland tofu dish your hippie friends brought to a potluck that made history as the worst debauchery of tofu cuisine. It's about as far from flavorless, texture-less vegan-nightmare foods you could imagine. This dish has rich, complex flavors thanks to the spicy sauce, crispy veggies and yummy tempeh. I assure you, with all this yumminess in a bowl, you won't miss animal-based proteins at all. And you might even like the veggies you don't usually like when covered in this sauce. Tempeh is made from fermented whole soybeans (or other legumes!), unlike tofu which is more processed and doesn't contain the whole bean. Tempeh takes on the flavor of sauces beautifully and has a meaty texture that you can really sink your teeth into, but is still easy to chew. Essentially, it's the perfect protein. If you haven't tried tempeh before, I think you will be wonderfully surprised when you have your first bite of this phenomenal dish. If you've tried it and disliked it, this stir fry will rekindle your love! It is so well seasoned and spicy and saucy that you won't believe your eating something so healthy! My tummy is feeling much better lately...great enough to eat spicy things! This is the second time this week we've made this dish, and we made it last week too. I'm really excited about having the leftovers for dinner tomorrow. Sigh...can you tell I'm a little obsessed?!?!

I've broken the recipe down into steps, which follow the ingredients, and included the ingredients separately to make natural 'faux hoisin sauce', to enjoy with other recipes.

Tastes like heaven: soy tempeh, carrots, broccoli, snow peas, criminis, green onions on Quinoa,

This recipe was inspired by 'Chloe's Kitchen's' recipe of Mongolia BBQ Seitan. Seitan is a wheat-based protein similar in texture to meat, and so we've heavily adapted this yummy to make it free of common allergens like wheat/gluten, dairy, eggs, and processed sugars (and potentially soy-free).

Chickpea tempeh w/ rice

The original recipe calls for hoisin sauce, which consists usually of soy sauce, sugar, caramel food coloring and flavoring/spices. Ick! I found a recipe for creating a delicious 'faux-hoisin sauce' using nut/seed butter and soy sauce. I've included it in the 'sauce'. Enjoy this healthful, spiced, delicious recipe atop brown rice or quinoa. 

Note about measuring:

soy tempeh & quinoa = magic. everytime.

I'm going to be honest. I'm not a measurer. I'm not a follow the recipe by the book sort of person. I usually actually measure vinegars and lemon juices, but for the rest, I throw in a dollop and then smell the resultant concoction. Does it need more lemon juice? I throw in a titch? It needs more Spice! In goes a little more hot sauce. That's how I roll, partly because I'm too tired to measure everything exactly, and partly because I'm a taste-and-adjust sort of cook. Do whatever makes you feel comfortable. And as long as you are relatively close to the amounts listed, you should be peachy. Learn to guestimate. It takes practice to get comfortable knowing what a 1/2 teaspoon is compared to whole!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Mongolian BBQ Tempeh Stir Fry Recipe

A Gluten Free, Vegan Dish (potentially Soy/Nut Free, see 'Allergen Check' after instructions)

Serves 6-8 people (half batch = 3-4)

~heavily adapted from 'Chloe's Kitchen' Cookbook~

~this is a double recipe. trust me. you will want left overs! just throw the leftovers back in the frying pan to heat them up for a snack/dinner/lunch the next day.~

This recipe comes together faster than it looks. Bring out everything in advanced...save yourself all the trips back to the fridge! Below, I've broken down the steps into manageable steps. The italicized ingredients are the recipe for making faux hoisin sauce, so if you can find a natural hoisin, substitute it for this made-from-scratch recipe. Use 1/2 cup of store-bought hoisin.

 Ingredients:

• 2 tablespoons + 2 teaspoons soy sauce
• 1 tablespoon + 1 teaspoon nut/seed butter (tahini/almond butter/sunflower butter/peanut butter)
• 2 teaspoon agave/honey/rice syrup (or molasses => not gluten-free unless made from sorghum)
• 1.25 teaspoons seasoned rice vinegar
• a garlic clove, finely minced/microplaned
• 1/8 teaspoon black pepper
• (optional) 1 1/3 teaspoons sesame seed oil
• (optional) 2/3 teaspoon Chinese hot sauce (more or less to taste)
• 1/2 cup water/tea/vegetable stock
• 2 tablespoon soy sauce
• 2 tablespoon agave/rice syrup/honey
  
• 2 teaspoon lemon juice
• 1-2 teaspoons chili-garlic sauce sriracha)
• 4 teaspoons grated fresh ginger (galanagal is fantastic if you can find it)
  
• 1/4 teaspoon cinnamon (trust me. doesn't taste like cookies.)
• 1/4 teaspoon ground cloves
• 1/2 teaspoon of Chinese five spice powder (optional. but delicious!)
• 3 cloves of garlic
• 1/2 an onion, chopped (use 3/4 of an onion if you're making a double batch
• 4 cloves of garlic, or more, to taste (garlic is delicious Lyme and general bacteria fighter, so I always include a lot in my recipes!)
• 6-8 oz mushrooms stemmed and sliced (portobello, crimini, shitake, button, brown), about 5-15 button mushrooms or baby portobellos aka crimini's (depending on if you're cooking a double batch, or single.)
• 4-8 oz, snow peas, strings removed (or a good cup, cut) (depending on if you're cooking a double batch, or single.)
• 1 'block' of tempeh, cut into thin strips (use 2 blocks if you want lots of tempeh in the leftovers!)
•  add in any veggies you have on hand! broccoli, snap peas, snow peas, carrots, bell peppers, zucchini, frozen peas, bok choi...any vegetables work beautifully! = 4 cups or more if making a double batch!
• 2-4 cups cooked brown rice/quinoa/etc (depending how much grain you want! and whether you're making a double batch, or single.)
• 4 scallions, thinly sliced on bias
• 1/2 cup chopped cilantro
• 2-3 tablespoons oil (for frying) - we used olive oil, just watch it to make sure its not too hot (coconut or organic canola works)

Break it down now. The method:

Sauce:

1. Whisk up 1/2 cup 'faux hoisin sauce' (or naturally sweetened hoisin sauce). It will not mix well, but that's just fine. Once it goes into the wok/fry pan you won't notice to isn't emulsified.

• 2 tablespoons + 2 teaspoons soy sauce
• 1 tablespoon + 1 teaspoon nut/seed butter (tahini/almond butter/sunflower butter/peanut butter)
• 2 teaspoon agave/honey/rice syrup (or molasses = not gluten-free unless made from sorghum)
• 1.25 teaspoons seasoned rice vinegar
• a garlic clove, finely minced/microplaned
• 1/8 teaspoon black pepper
• (optional) 1 1/3 teaspoons sesame seed oil
• (optional) 2/3 teaspoon Chinese hot sauce (more or less to taste)

chickpea tempeh & rice = gf, v, soy/nut free

2. Add the following ingredients to the 'faux hoisin sauce'. Whisk, then set aside. (This Mongolian sauce is a double-recipe. If you have a lot of veggies and tempeh, use it all. If not, save some in the fridge for your next batch of Mongolian tempeh. There will be a next batch. Seriously.)

• 1/2 cup water
• 2 tablespoon soy sauce
• 2 tablespoon agave/rice syrup/honey
• 2 teaspoon lemon juice
• 1-2 teaspoons chili-garlic sauce

Spice & Veggies

3. Measure out Spice Mixture, and set aside. (This Spice Mix is a double-recipe. If you have a lot of veggies and tempeh, use it all. If you love medium spiciness, use it all. If not, save some in the fridge for your next batch of Mongolian tempeh)

• 4 teaspoons grated fresh ginger (galanagal is fanastic if you can find it)
  
• 1/4 teaspoon cinnamon
• 1/4 teaspoon ground cloves
• 1/2 teaspoon of chinese five spice powder (optional. but delicious!)
• 3 cloves of garlic

4. Prepare vegetables/tempeh. (don't worry about getting the exact right amount of veggies. essentially you want about 1 cup of each veggie, and hopefully upwards of 4 different veggies. we use about 4 cups of veggies, which will cook down a lot! Variety in veggies is part of what makes this dish so nutritious and beautiful

• 6-8 oz mushrooms stemmed and sliced (portobello, crimini, shitake, button, brown), about 5-15 button mushrooms or baby portobellos aka crimini's (depending on if you're cooking a double batch, or single.)
• 4-8 oz, snow peas, strings removed (or a good cup, cut) (depending on if you're cooking a double batch, or single.)
• 1 'block' of tempeh, cut into thin strips (use 2 blocks if you want lots of tempeh in the leftovers!)
•  add in any veggies you have on hand! broccoli, snap peas, snow peas, carrots, bell peppers, zucchini, frozen peas, bok choi...any vegetables work beautifully! = 4 cups or more if making a double batch!
• 1/2 an onion, chopped (use 3/4 of an onion if you're making a double batch
• 4 cloves of garlic, or more, to taste (garlic is delicious Lyme and general bacteria fighter, so I always include a lot in my recipes!)

Toppings:

• 2 scallions, thinly sliced on bias
• 1/4 cup chopped cilantro

Grain:

• 2-4 cups cooked brown rice/quinoa/etc (depending how much grain you want!)

Directions

sizzling, steaming deliciousness

1. Whisk faux-hoisin, water, soy sauce, sugar syrup, lemon juice and chili-garlic sauce in a small bowl. Set aside.
2. Heat oil over medium high heat in a large skillet. Stir fry mushrooms and seitan until lightly browned and mushrooms have released their juices. Add Spice Mixture and cook a few more minutes. 
3. Add in harder vegetables (carrots, broccoli etc) until they begin to cook, softening a little.
4. Add the sauce and snow peas and reduce heat to medium. Let cook until sauce has thickened, which might happen quite quickly. Remove from heat and sprinkle on top scallions and cilantro and then serve over the rice.
5. Eat with gusto while warm. xoxo

chickpea tempeh, snap peas, crimini's, cilantro, onions, scallions

 

Allergen Check: Want to make this recipe 'free' of certain allergens? Make sure you read these tips before choosing ingredients, particularly if the person you are cooking for has allergies! When I use common allergen foods that I am not personally allergic to in my own cooking, I make sure to use a clean spoon when dipping, say, into the peanut butter, and make sure that spoon either goes in my mouth :D, or directly into the sink, not into the jam jar or butter, for instance. Using clean implements is a good practice anyways.

Gluten-Free (use GF tamari, Braggs Liquid Aminos or Coconut Aminos)
Soy-Free (use Coconut Amino's in place of soysauce, and Chickpea tempeh)
Processed Sugar Free (possibly use Stevia if trying to replace all sugars? try experimenting with little amounts of Rice Syrup, my favorite low sugar syrup, or honey)
Nut Free (use a creamy seed butter, such as Tahini (Sesame butter), or Sunflower seed butter)

Droplets

It's surprising how just the smell of alcohol swabs, the taste of saline in my mouth, is enough to make me scared. Not scared of the actual infusion of a 1/4 dose of minocycline. What makes me feel ill before the medication actually is even hooked up to me is the knowledge that in hours, or days I am going to be feeling terrible. Or if this tiny dose doesn't do much to make me herx (ie: all my symptoms will get infinitely worse because of the toxins released from the bacteria dying in my body), when we increase it to 1/2 a dose, and work our way over a few weeks, or a month to a full dose...well, then I will start to feel lousy.

It is really, really easy to get used to not doing IV meds. Because when you are on them, you feel terrible and ill all the time, and when you go off them, you do go downhill a little, but gradually. It's nothing like this burning pain that started up in my chest 5 minutes ago. And we've only dripped in about 1/8 of the 1/4 dose I will be doing tonight.

I only was infusing for less than a minute before I could feel the cold hands of the drug sizzle out through the end of my peripherally-inserted-central-catheter into my heart. The best way I can describe it is it feel like heartburn, but literally in your heart. It feels like butterflies flapping around the cage of your abdomen, but instead in your rib cage. It is a cold feeling that seeps over you, kind of like what I imagine it feels like when those humans in the 'Invasion of the Body Snatchers' get taken over. This feel creeps over you and then suddenly it's all around you, all in your lungs and your head and your heart and you feel like you can't get enough air. It makes me want to cough until I can clear my lungs, but that won't happen. You can't get out what you've put into your veins. Only your organs can filter it out as best they can.

On the bright side, I only have to infuse ever 3 days or something like that. So basically when infusing, it feels scary and painful, and after that I just have to wait for my worst symptoms to peak. Easy peasy. Beats an IV every day!

You know what makes infusions fly by? The Halifax Comedy Fest. And coconut ice cream, with frozen raspberrys and chocolate chips. Pick your chocolate covered poision and put it together with your favorite CBC show, and basically that's the making of a fantastic evening. And I can trick myself into thinking this 'invisible' clear fluid isn't all over my body, trickling under my skin.

It is going to be fine. It will be fine. It was fine before. I can do this again. That's what I need to remember.

I can keep doing this until I'm better or at least until the world runs out of Coconut Bliss ice cream. ~

Aegri Somnia Vana*

to the land beyond the sea

Always,
the fragrance of the earthen potpourri
    walking down the hint of a path,
    erased by impatient feet,
                      to the sea.
The forest marched down
to the waters edge
    clung to slivers in the severe wrinkled face of the cliff, and
    on islands the tide shaped;
Yet couldn't,
   wouldn't press,
   even a gnarled toe
into the rocky sand-shore,
    to feel a shy wave
    glide forward,
    reach around toes to heals, and
    tug you in closer to play.
How lonely!-
    to only drink
    the windward rains;
only feel briny breezes run wild fingers
    through needle-tresses,
only smell the suns reflection, scattered from every
    glistening pebble
    bull kelp, fallen feather;
To watch, and wait, at the precipice of a wonder;
To be rooted to this rugged, cumbersome land
    and never to touch, taste,
    one teardrop
                       of the Pacific's compassion.

May your tears always find a path home to the sea. ~

Olympic Mountains

Written on November 5th, 2012

*Translation: A sick man's empty dreams, a line of Horace's

Dream a Little Dream of Hope

I knew as soon as I posted about my icky abdomen year that things would start to look up. You know that feeling? When you are struggling with a task and then open your mouth to ask for a hand, and then all of a sudden you solve it? Beautiful, isn't it? This is a new year, a clean slate, a season of healing. And I hope it is beginning for all of you.

There have been a lot of positive changes for my tummy, thanks to a lot of new factors:

1. Magnesium oxide. Pretty sure this is code for 'nature's-feel-good happy-calming' drug. Seriously. Magnesium is amazing. This kind of magnesium particularly targets the digestive tract to fight the babesia hanging out there.

2. Aloe Vera Gel. Does it taste like Shrek snot? Absolutely. Does it help your tummy? You bet. Pinch your nose, eat something yummy afterwards and trust me it will be worth it. Coats your stomach, which is great for when you have to take all sorts of nasty pills which hurt your stomach lining (or have an ulcer, like me).

3. Nucca chiropractic. Essentially, it's the realigning of the atlas (near the top of spine in your neck), which if out of alignment, makes the 'signals' coming down from your not as clear to the body. A nerve problem could have been causing my Gut Palsy, so hope it continues to help! After the first treatment, I felt like a weight had been lifted off my shoulders, and the energy/chi/life force/energy pathways on my left side, which had been blocked for so long, were balanced (yay!).

4. Soup diet. Just for a few days. I don't like to think it helped, but who knows. Mum's have this pesky habit of being right ;).

Tasting is believing.

So all told, my tummy (and the body connected to it!) is feeling much better. Still a bit uncomfy, but it's feeling well enough to eat cookies :). I made the best cookies in the whole world from "Real Sustenance" blog. They are made entirely from nut/seed flour, and a sugar-free, soy-free, and wheat/gluten-free anddddd vegan. I know. Sounds like it might be free of yumminess too, but let me assure you that is not so. I used walnut flour, which I made myself in a food processor, soy-free margarine (but will use less next time. walnuts are oily!), coconut palm sugar, almond milk, and Enjoy Life Allergen-Free chocolate chips. Flat, crispy little golden-brown cookies is the result. Perfection! Can't wait to bake some more :D.

I wanted to share with you a collage I've just finished creating. It went together so quickly. Sometimes I have a very strong vision when I begin a collage, and I find all the images I want quickly, and they all fit together in a beautiful way. And sometimes I can't find the images or words that I'd like, and have to go about re-envisioning my collage. I wanted to create a rainbow, dream-inspired collage, as a gift to Help Fill A Dream Foundation for all their amazing support and love over the past 4 years. I hope it will inspire whoever comes to their office to open their hearts, and to dream of hope. <3 br="br">

Mixed Media Collage: magazines, calendars, 1888 Encyclopedia Britanica