"Give light, and the darkness will disappear of itself."
~Desiderius Erasmus

Monday, March 10, 2014

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?!

Tuesday, February 25, 2014

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 ;). 

Friday, January 31, 2014

Ancient Brain

I've never let the pain get in my way. Or the wheels. (Sometimes I feel like a spider, a girl with 2 arms, 2 legs, and 4 wheels equals 8 limbs. Have you seen Monsters Inc? I 'roll' by my self like freakin' Mr. Waternoose.) I do amazing things, and they're almost bright enough to hide the pain of living, even from me. 

I have been so busy, I actually don't have time to be sick. Illness is a major inconvenience! Who needs pill breaks and resting and insomnia? I don't let anything stand between me and living fully, especially not being sick, but it requires a re-evaluation of life, changing the definition to suit your needs. Exchange the cloak of pain for a smile, and put the tension in your back pocket for a time. But like every magic tricks or slight of hand, the reality behind the make-believe can't be hidden from the magician. 

I can't figure out the best way to list all the amazing things I've been up to without sounding really conceited and irritating. And I can't figure out a way of talking about the bone pain without feeling like I'm hosting a whiney pity party. Which is why I am writing all this bizarre preamble. I guess. I don't know. Sometime my fingers take my brain for a walk.

Um…I actually started writing this post because I wanted to talk about the Greek and Roman studies class I was taking at UVIC. See….you can never trust your fingers, because they take you places that your terribly logcial mind would not. Without further ado...I'm auditing a class at UVIC (my 3rd so far!), called 'Jews and Christians', which is every bit as rich in primary sources and apocryphal books of the bible(s) as I was hoping! I've also been studying latin for the past 1.5 years, and it's marvellous! I only wish I'd learned it before tackling French and Spanish, and Biology (and music! and literature!), because so many of these words and terms have latin roots. Although the meaning of words have changed sometime during their multi-millennia trek from Latin to English, knowing the root of words help to understand their meaning. Can't wait to start reading Juvenal's satires & songs of Horace, but I'm definitely not there yet. 

The teacher of both these classes has the sort of passion for his subject that I was starting to believe was impossible with adults ;). We met Dr. Rowe at a thrift store and started chatting in line about Lyme disease. I learned that he was a professor of Greek and Roman studies at UVIC, and when he asked if I wanted to audit some classes, I was so surprised, and excited. My love of Roman and Greek mythology started at an early age, when a family friend & librarian gave me children's version of Greek Mythology, 'In the Morning of the World'. When I grew a bit taller and could reach the top shelves of the library, I found Robert Graves' Greek Mythology tomes, which are a beautiful rendering of a culture's complicated myths. I'd wanted to learn more about Greek & Roman philosophy, history, and religion at university, but I never dreamed I'd be able to handle the coursework, or keep up with note taking, or even make it classes. 

Sometimes you can surprise yourself. 

I type (almost) as quickly as someone can speak and am learning to tolerate my robot 'Bruce' reading and butchering ancient sources ("Kay-zar" is one of my favorites, for Caesar. Oh Bruce-y.) 

For whatever reason, I can 'learn' Latin in the way I just can't learn any other subject, with the exceptions of Music and Spanish (a different part of my brain? who know!? who cares!!). I still struggle with severe short-term memory impairment, which makes it fun when I know no ones name, or if they know me. So my secret is you treat everyone with kinds and with an open heart, and figure out from their facial cues whether or not they know you. It's hard for me to think of answers abstractly to Latin grammar questions (I hate & spurn grammar. Could you tell?), but if someone asks me a question and I don't think about the answer, it is there, waiting for me to express it. I love translating Latin...it feels the same as working out an advanced Suduko puzzle.; you solve little pieces and get a glimmer of how it all goes together, and then all at once you've solved the meaning of the sentence, filled in all the numbers. 

Sunday, January 26, 2014

Refuge

School. 

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

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

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

Tuesday, December 31, 2013

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!!)