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Archive of ‘Uncategorized’ category

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It was a Wednesday

It was just a Wednesday. I wanted it to be more. For the world to halt and for the flurry of crepe prep and gift wrapping to begin after I got up, to fret over the frosting texture while elbow deep in chocolate batter, choosing which place to go for our traditional birthday walk. February the 15 is a holiday at my house. It’s my fathers birthday, and it wasn’t the same without him there to celebrate. It would have been my Dad’s 70th year orbiting this Earth, and I’m sure he would have had some wry comment about him being “70 years young!”. You need to imagine him saying that with an exclamation point in his voice, one finger jabbing in the air to emphasize the point. Age was a relative thing to my father, ‘young’ truly a state of mind, and ‘old’ something that crept up on you when you let a little bit of the sparkle and wonder out of this life. And Dad clung to every speck of magic. And he taught me in every gesture, every smile and twinkle of his eye, to do the same.

My family’s birthday are magically well placed so that every 4-5 months we get a party. It’s seriously well planned, props to my ‘rents for that. But this February snuck up on me. Usually I see Valentine’s decorations and that’s my queue to begin the gift knitting but this year it was like my brain wanted to protect me from this truth. That today I’d have to celebrate without him. That today would be lonely in a way that the rest of the year couldn’t quite top. I hate these ‘firsts’.

last years birthday toque!

I missed the ritual we’d carefully crafted together for this day. Preparing food – almost more than the eating of it – is a religion in our house, but particularly between my father and I. Most people laughed and just couldn’t understand how we could literally start prepping dinner around 3 pm and still take about 4 hour to get a meal on the table. We took “slow cooking” to an impressive level. But more than our usual walk outside, the board games after dinner, the cake and candles, I miss making my dad a card. I know. I was surprised to discover how much I missed the ritual. I would spend forever making my parents handmade cards every year for their birthdays, cutting out tiny pictures, tracking down the elusive “y’s” and “p’s”, and if I could find one, an “!”, to spell ‘H-A-P-P-Y B-I-R-T-H-D-A-Y-!”, ransom-note style.

I love crafting things for people.

*Gasp*.

I know.

You’d never have guessed, right?

But there is something magical about the time you take to craft something with your own two hands for someone you love. An hour or two, or 60, if you’re crazy and decide to make your very tall father a cabled vest *insert tears and creative cuss words here*. I spend that time solely focused on the person, little snippets of memory floating through my mind as I flip through magazines to find the perfect pictures to arrange. Something they’d love, something that reminds me of our relationship, or the strange wonderful beauty of nature, or completely random shit. I have this penchant for cutting out really dainty chandeliers, snipping around the curve of each bulb, making the lines as close to the image as I can. Why? I have zero clue, I just like them, kay? I’m like the paper-chandelier-cutting monk.

And then I’d write in them, the lines of text running on an angle across the page, because apparently I am still in grade school and never mastered the art of writing straight without guiding blue lines. I liked to keep my Dad’s cards eccentric and a kind of word collage of emotions. It was a tiny conversation, a snapshot of love, that rested on the fridge or the bookshelf until next years card usurped it.

But today was different. Today was quiet. Today I spent trying not to become a curled mass of shadow and brokenness in the corner. To now fold in on myself like human origami of grief. I photographer eleventy billion buttons for my shop, a task so mundane and menial it felt almost sacrilegious to practice today. But it was a good distraction. Mama and I went out for dinner at one of our favourite places, Bin 4, and enjoyed a glass of red wine together. It’s the first time in 8 years I’ve been able to drink without having pretty serious med interactions, and it was magical and delicious. I was all eager to prove I was over 19 and can you believe it I WASN’T EVEN CARDED. Like, why else do you carry I.D. if not to whip it out to random waiters and bartenders to inform them that, yes, I am a grownup, and here a picture of me looking my absolute best, photo cred to the talent at the DMV? In my waitresses’ defence, I did ask what blend the wine was, and for a taste, which I proceed to sample correctly the way my father taught me at the ripe old age of 4. So I guess I came across as classy and mature AF, which I suppose is a little win. I’ll take it.

And then we ate a lot of dessert. All the desserts. Which was awesome.

I’m going to break this stream of conscious with this complete non sequitur, to humbly brag that I have the best friends on the planet. Sorry, this is 100% verifiable, but don’t ask them yourselves, as they are so freakin’ humble, I have to do the bragging for them.

My bestie Morri knew oday might be a hard day for me. It kind of snuck up on me, and we were talking about that, and she was joking around with me, cheering me up and distracting me in that way only amazing friends can. And somehow the conversation turned jokingly to delivery of emergency ice cream. And I jokingly mentioned my favourite flavour was Salted Carmel. And my friend is one of those rare people who doesn’t really love ice cream, but I love her anyways ;).

Yeah. So this afternoon I was, and I quote, like, “whaaaaat?”, when a pint of Luna & Larry’s Salted Carmel Coconut Ice Cream was delivered. You need to imagine me saying it in a very high pitch voice with lots of excitement and grabby hands and smiles from ear to ear. I wanted to eat that goddamn pint for breakfast. Looking back, why didn’t I do that?!

“Whaaaaat?”, she exclaimed!

And I felt so loved, and so fundamentally understood, it was magical. And I made it through this day. With love from the people around me, which is fierce and wild and strange and full of magic too. That love, from my father, from my tribe, will always make the day brighter <3.

 

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(Whoa. Did you feel that?) : The Paradigm Shift

I wish my Dad could have been at the National Lyme disease Framework conference tonight. He would have been so proud of this community, and of what we hope is the beginning of big changes. Dad never made it a secret that he was proud of me in all things, but especially of my advocacy work and writing, which meant the world to me <3.

I am so beyond drained. It’s been a rough past month, emotionally and physically, but I’m not going to talk about that right now. I really want to talk about the incredible evening at the commencement of the Framework Conference in Ottawa, our nations capital. After literally years of work. lobbying over 80 MP’s and Senators, community activism, letter writing, and speech making, we’re nearing the home stretch of the goal of Elizabeth May’s Bill C442, which called upon the Federal Government to host a strategy conference to confront Lyme Disease. We heard from well over 100 patients and advocates tonight, whose 5 minute talks were extremely compelling and emotionally intense. Over 12 hours of testimony was recorded tonight, with four rooms of simultaneous speakers. It was incredible to see a community of the disenfranchised, seriously ill, and medically neglected come together in such a strong show of support. I think we sent the message very clear that we are here. We aren’t going away…the movement is only growing in strength and sadly, in numbers.

Beginning of the National Lyme Disease Framework Conference

Excited? A little ;).

I hope you had a chance to catch the speakers tonight (you can register here although I’ve heard people had some trouble with this!). There was an incredible feeling in the room, and our collective stories inform the conference, moving forward. I’d like to share with you my speech from the evening.

Hello. My name is Nicole Bottles, I’m 23, from Victoria, BC and a board member of the Lyme Disease Association of BC. I would like to tell you how I ended up rolling in here today, 8 years after my initial diagnosis. And it begins with a tick the size of a poppy seed. My story reflects the experience of many Canadians, who follow a similar journey: a mysterious illness, multiple specialist visits, extensive lab work, and culminates – possibly years later –  with misdiagnosis or no diagnosis at all. Tragically, delay in treatment gives the borrelia time to disseminate, and makes it more difficult, if not downright impossible, to treat and eradicate.

In 2008 I was a healthy, straight-A student. I loved my school, choir, hiking and kayaking. It took several months, and one tick bite, to change my life. During my grade 10 year, I never recovered after a prolonged flu-like illness. Not having the strength to get out of bed, even for an hour of school was one of the hardest, and scariest realizations of my life. I went downhill very quickly, and within a few months required a wheelchair, and experienced intense chronic pain, swollen joints, exhaustion, and severe short-term memory and cognitive impairment. Trips to many specialists and diagnostic tests were fruitless. By chance, we learned about Lyme Disease, and the host of seemingly unconnected symptoms made sense. The symptoms I developed were a classic manifestation of Lyme Disease and I was so relieved. I thought “now all I have to do is a quick treatment and I’ll have my life back”. Needless to say, 8 years later, it is not that simple.

I had a negative Lyme test result, like so many other Canadians, and versus making a clinical diagnosis, most doctors rely on this flawed lab test to diagnose Lyme disease. If someone is diagnosed and treated immediately, a $100 of antibiotics should see them returned to health. The cost of my own treatment has been well over 1000 times that amount. I am one of the lucky ones who was able to seek guidance of four leading US experts. Friends, family and community donated at fundraisers to support my treatment outside the country, which isn’t covered by our health care plan. A 2006 study from the US CDC by Zhang et al. (who we’re fortunate will be speaking later), found that the annual “burden of disease” (the BOD) when Lyme was treated early was under fifteen hundred dollars, for only one year. If the illness was left untreated, developing into a chronic infection, the “BOD” jumped to sixteen thousand per year, every year. The cost of being misdiagnosed is astronomical for our health care system. The cost to patients could be their lives.

Our nation is on the cusp of creating a paradigm shift in the way we confront Lyme disease. Time is ticking as our communities encroach on wildlife habitat and the climate changes, leading to an explosion in tick populations. The National Lyme Disease Framework has the potential to be the catalyst for change. It has already brought us together; patients, advocates, physicians, researchers, Public Health Officials. Through reconciling the two standards of care into a workable set of guidelines, we can transform a static situation into a constructive environment for patient care.

I could talk about the need to rewrite the diagnostic algorithm, invest in active surveillance, address the limitations of testing, and physician awareness, but the overarching theme echoed here today is concise; education, prevention, treatment, and testing. Simple enough, in practice, to implement. However, patients continually battle an incredible stigma every time we walk into a doctor’s office, which is why we need strong leadership and open-mindedness from all of us here in order to move forward. We have been extremely patient. But as more and more Canadians fall ill, our community feels a sense of urgency to ensure that others don’t have to experience devastating affects of not only loosing their quality of life, but struggling to receive treatment. We must do better. And we’re optimistic that this chance to work together for the well-being of all Canadians will finally commence an era where a walk in the woods is no longer a debilitating activity.  ~

I feel such gratitude to be part of this conference, and to do my part to ensure others don’t have to face similar problems. Is a 3 day conference going to fix 3 decades with of problems? Of course not. But I’m optimistic that this is the real beginning of the paradigm shift, that the tectonic plates of patient advocacy, medical research, and collective compassion will press together and create the first ripples of change. Drinking tea and eating pineapple in the same room as public health officials and scientists from all sides of this issue is a damn fine start.

This quote that keeps playing through my mind tonight, and as I look forward to a very early morning and full day tomorrow;

“Change will not come if we wait for some other person or some other time. We are the ones we’ve been waiting for. We are the change that we seek.”
~ President Barack Obama

So welcome, bringers of change. Keep fighting. Keep moving forward. It’s the only place we are wiling to go.

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Deep peace of the running waves to you.

If I do not write this today, I fear I won’t be able to write them for the chasm of grief in me.

A couple of days ago, Dad looked at me, said “Hi”, and squeezed my hand and it was the most magical, perfect moment. I don’t think there is an adjective for that emotion. I might be able to play it on the piano, or pick out a paint chip to match the color of it, but it wouldn’t be quite right. Because it couldn’t come close.

Yesterday, we figured out a way that I could lie next to him, so I could bury my face in his shoulder, and be able to kiss his cheek, and hold his hand comfortably. He knew we were there, and that was enough for us.

We spent the afternoon, and long into the evening in his hospital room. I sense with every achingly difficult breath he takes, that a bit of his spirit, his soul, or whatever it is that has made him “Dave” for 69 incredible years, is fading. There are long pausing in his breathing, which make me catch mine and in a weird way hope it is the final silence of his body. He did not wish to linger in his leaving of the world. His body is so hot, almost feverish, and trembles slightly. I can hear his heart thundering in his chest. I wish I could describe the sound of my fathers heartbeat, because it is a beautiful sound. It’s a bit like the tone a rubber band plays when stretched, slightly taught between thumb and forefinger, but also the sound you hear in seashells. I know it beats “I love you” in 2/4 time.

As I was writing this, Mum came in to tell me the lovely nurse called around 2 am, to tell us there had been a change in Dad’s breathing, in case we wanted to come. I spent the night with him, curled next to him, holding his hand, until the sun came up.

Deep peace of the flowing air to you.
Deep peace of the quiet earth to you.
Deep peace of the shining stars to you.
Deep peace of the gentle night to you.
Moon and stars pour their healing light on you.

~ a Gaelic blessing <3

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Body.Mind.Lyme Blog Interview!

I had the pleasure of connecting with Kerry, another young Lyme disease warrior early last week. She seems like such a sweetheart who has been through so much <3. Kerry’s not only on a journey to wellness, exploring alternative treatments and therapies, but a spiritual journey too.

Her story probably sounds familiar to a lot of you…tick bites in early childhood, later being diagnosed with autoimmune illnesses, generally feeling unwell until finally getting a Lyme disease diagnosis. In her words;

“Lyme disease has driven me to want to see and experience the world. My wake up call to always be wide awake.”

Pretty inspiring stuff, n’est pas?

You can read my interview on her blog, Body.Mind.Lyme here!

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Insomnia is a Dragon.

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

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

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

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

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

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

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

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

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Withdrawal ~ A life Affirming Experience

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

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

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

– hot/cold sweats

-intense abdominal pain

-involuntary muscle tensing/stretching

-shaking, chattering teeth

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

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

-complete loss of appetite

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

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

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

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

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

 

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That Scale from 1-10

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

Scale from 1-10

Pain in the abdomen that feel like

a car alarm going off,

smoke detector blaring,

volcanic,

ambulance wailing,

and I,

stranded.

In my house. In my walls.

My body, weary travel companion;

Undetachable from this.

Unreachable.

onetotenonetoten

one to ten

What is your pain like on

a scale

of

one

to

ten?

But the pain dosen’t speak

It doesn’t do roll call

and count the ways it is itself.

It leads to the same conclusion:

too much.

A number a number

no waiting room number

just my identifying health care number

which for security reasons I shall not inscribe here

but

it’s 9 digits long, and roughly speaking

marks my number

on that scale

you weigh my suffering in.

Pain, unaccountable.

And I am still here in this darkening place

while ignorant armies

clash, crush, burn, stab,

in the early morning night.

Undefinable

Unattachable

Undetachable

Unreachable. Yes.

and

undefeatable.

 

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So “Let’s Talk About Lyme”…

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

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

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

giant clay ticks to make with kids!

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

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It’s A Jungle In There

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

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Sunshine in the Forecast?

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

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

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

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

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

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

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