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Uncategorized | 1 Comment

Oh hi New Year. We meet again.

(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!!)

drive, lake, lakefield, ontario, ottawa, resting | 1 Comment

Rest & Recharge at the Lake

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!
Elizabeth May, lobbying, Lyme Bill, ottawa | 0 comment

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
arm bands, babesia, bartonella, Elizabeth May, IV, spirulina, tired, Zithromax | 3 Comments

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.

David Cubberly, Elizabeth May, Lana Popham, Lyme Rally, positive, speech, World Lyme Day | 0 comment

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!

gf, Spicy, tempeh, vegan | 0 comment

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)

chest, heart, IV, new drugs, pain, pancreatitis, PICC line, tired | 4 Comments

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. ~

ocean, poem, wheelchair | 0 comment

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

abdomen, aloe, art, babesia, baking, bells palsy of the gut, collage, cookies, frozen gut, HFAD, magnesium oxide, nucca, pain of lyme | 0 comment

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
abdomen, babesia, colon, CT scan, dr. marra, ER, hospital, kidney stones, laxatives, MRI, pain, pancreatitis, the straight and narrow, tired, ulcer, ultrasound, X-Ray | 5 Comments

Fresh Beginning

And with these words, I break my blogging hiatus.

There, that wasn’t so hard. But still, I can’t really explain why I haven’t been writing. I suppose, like I’ve always said, I handle most medical things really well, unless then involve my abdomen. And this has been the year when all everything has decided to sporadically go wrong in my tummy. It began with pancreatitis, and I’m really hoping it is ending with Bell’s Palsy of the Gut aka Frozen Gut Syndrome aka OUCH.

This was what I wanted to happen:
“Well, it’s been 2 weeks since I’ve been out of hospital, and all the pain in my pancreas has vanished! It’s amazing what a little starvation will do (that’s how you treat pancreatitis). The people at the hospital were a little frustrating, because they kept hurting me more by trying to ‘help’ me, despite warnings of my high level of pain, latex allergy and chemical sensitivities. I guess I’m officially all better now…yay! I think I’m going to bake some gluten free brownies to celebrate. Ta ta for now!”

The pancreatitis problem was solved by 3 days of no food and water (seriously. nothing.). I’m going to be honest; pancreatitis was excruciating, a kind of physical pain that is difficult to block out, although I experience the same intensity of pain daily. Essentially, my pain load doubled over the course of a few days, which wasn’t fun. It hurts to bend, stretch, move, sit up, drink, hiccup, cough, sneeze (especially painful). Please take care of your pancreas, which is located right beneath your belly button. For the 2 days before we went to ER, it was incredibly painful and I basically stayed in bed all day, but figured it was ‘just a Lyme thing’, even though something in my gut (no pun intended) told me it was otherwise. My advice?: don’t wait if you think there is a slight chance that something could be seriously wrong. It could be a Lyme thing, and something seriously wrong. The ER doctors will probably goggle at your prescription meds and raise their eyebrows at your diagnosis, but medical intervention is worth it. Loosing your pancreas is not worth skipping the 8 hour ER wait (and on the bright side, they will get you in a bed right away if you have pancreatitis. fake yay!).

Then I had a few follow up appointments, and now have to be careful that I don’t get it again because it can be a chronic condition. I really want to keep all my squishy bits, thank you very much! I still have all my organs, fyi. I was seriously weakened by the intense physical pain/trauma of my inflamed pancreas, and the dehydration and lack of food while in the hospital. I felt lousy though, and I never felt 100% after the pancreatitis. I guess I thought something else was wrong, in the back of my mind, but what I voiced aloud was the idea that I was tired and recovering. I have not been on IV antibiotics since then, because there is a good chance the IV med I was on caused the pancreatitis, and I don’t want to go through that again!!!

It was several months later when I began to develop severe abdominal pain. Different place, though, more to the side, and higher up. So it was a trip to ER for me, and after hours of literally crying with the pain – I’m usually a pretty tough cookie when it comes to pain, even the pancreatitis, but this was intense. It felt like there was a rock stuck inside my body; scraping-poking-piercing intensely. After hours, I finally asked some other nurse if I could lie down in one of the many empty beds, because for some reason my nurse judged I didn’t need one of the beds that has been empty for the last 5 hours. Nothing visible in scans, but all in the same casual breath, the doctor informed me I might have passed a kidney stone, and that I had a impressively impacted colon. Those sort of adjectives coming out of a doctors mouth worry me. His advice was take laxatives, many kinds, for a month, and then have another x-ray. Whoopee.

It was a very bizarre month. Laxatives makes it feel like you are scraping nails down your intestine walls. I was not hungry at all. I felt full, in fact. So full that I was practically in tears at the thought of a bite of toast, a sip of water. And still, the painful urination was always there, but would intensify so sharply and suddenly, and then last for hours, lessening gradually. I’m not sure whether or not I was born with medical intuition, or if I have honed these skills during my illness, but my mum and I both get clear ideas of what is going on. I knew, without question, I was experiencing kidney stone ‘showers’, many tiny stones, that were being missed with all the dipstick tests. I knew they would be missed, each time I patiently gave a sample, because the pain was not at its peak. High pain = passing stones, wouldn’t you think?

Laxatives by the handful. And nothing worked. I wasn’t constipated though, that’s the weird part. My stomach was bloated and hard and painful, but I was still able to go to the bathroom, and the laxatives weren’t doing whatever they were supposed to be doing. Months went by, and I’d keep going back for x-rays, and yup, my colon was still impacted. It was around this time that my urinary pain began to fade away. I tried to explain to each doctor I met the unsettling sensation I had that my abdomen had ‘turned off’, that it wasn’t working, that food was just sitting in my stomach all day undigested. I am very in tune with my body, and can feel the gentle buzz of peristalsis (muscle contractions which move food) in my belly. It’s a sense of motion or activity, of gentle movement, and energy in my abdomen. All of that was absent, my tummy had frozen, and I couldn’t convey the importance of this to my physicians.

Eventually, we saw a doctor at the hospital, the guy in-between your GP and being admitted to hospital…a quick-solving-patch-em-together-and-get-them-out-the-door sort of clinic. He tried to patiently explain that somehow, my impacted colon and painful urination were one and the same problem. I’m not a doctor, but I’m pretty sure those are completely separate body systems, with their own tubes and pathways. And the pain of each was very different and distinguishable, as I kept reiterating. Kidney stones are a very specific pain, a pain which wraps around your body like a tight belt, a squeezing, a sharp ‘rock like’ grating and a pain in your kidneys and ureter (the tubing that runs from your kidneys to your bladder), a pressure. This was very different from the dull ache and pressing pain in my abdomen generally.

At this point, my colon was so impacted, that you could see bulges visibly under the skin of my abdomen. Pressing on my abdomen, even lightly, you could feel hard lumps. It was disgusting. And painful. Painful to move, breathe, twist, stand, walk, lie down. I didn’t want to eat, I wasn’t hungry, and still I was being pumped full of laxatives. Nothing was helping. My colon was impacted for months, and by the end of my laxative regime, it was still only half solved. I was fed up with laxatives though, because they were just not working.

So about is about 6 months after my pancreatitis, and on-going colon problems, I began to experience more intense upper abdominal pain, an area previously void of pain. Several months later we figured out I probably have an ulcer. The medication for ulcers helped within a day, and now it hardly bothers me.

I feel like I could write a “12 Months of Abdominal Pictures” song.
In the first month of pancreatitis, my doctors ordered me: 1 ultrasound and a CT of my tummy;
In the second month of colon troubles, my doctors ordered me: 2 X-rays, and we waited for another ultrasound;
In the third month of colon and kidney pain, my doctor ordered me: 2 types of laxatives, 2 more X-rays, and we were still waiting for another ultrasound….
In the sixth month of colon and kidney pain, we finally got in to see, my geneticist, who order an MRI.
In the 9th month of colon and kidney pain, we finally had, my Abdominal MRI, … 3 types of laxatives, 2 X-rays, and an ultrasound for me.

Okay okay, you get the idea. I was zapped a lot, and developed favorite X-Ray clinics. Blah blah blah.

A few weeks ago, we finally got to see Dr. Marra in Seattle, my Naturopathic Lyme Doctors who’s saved my butt more times than I could count. Bell’s Palsy of the Abdomen is very common with Bartonella, and involves just what I described: part of all of the digestive system freezing, stopping moving, stopping digesting. It apparently has to do with a nerve running to your tummy. If you want to read more about it, read Dr. Virginia Sherr’s article about it. I started taking magnesium oxide, which in just a few weeks has helped immensely. No more sort-of constipation, less abdominal pain. My abdomen isn’t puffy! A holiday miracle :D. Yummy pies and cakes here I come. I want to talk more about all the awesome things I’ve been doing, but that should be a separate positive post.

Happy New Year to you of health, peace and joy!

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