Bite Me.

A True Holiday Miracle

2012-01-02T20:17:00.000-08:00

We have officially become a fixture in the ER. 3 visits in 3 days is a new record for me.

I should start by saying I am perfectly alright, and that us spending an average of 5 hours in ER each visit was not a reflection on the medically seriousness, but on how awfully inefficient the medical system is in Canada.

Basically, I was having a lot of strange sensations and pain in my arm, around Christmas, so on Boxing Day we went to a walk-in clinic. I get a warm fuzzy feeling when I enter a clinic, and the friendly receptionist in designer scrubs greets us. The thrill of familiarity of checking boxes of symptoms and filling out my name and Care Card # (which I need hardly point out I have memorize?). The smell of kill-everything disinfectant and hand sanitizer. Okay, I joke. Those are all the things that really BUG me when we go to a walk-in clinic. Except for the friendly nurses :).

We were hoping to not have to go to the ER to have my arm checked out, and instead check and see if I had an infection or something. I have been feeling quite 'low' lately, sometimes an indication of something more going on than the Lyme. This doctor was, like, actually a wonderful doctor. We usually have to demand a basic CBC (blood profile), just to make sure everything is normal while I'm on the drugs, but it was like this kind doctor actually got it. I wasn't the weird, trouble-making, difficult patient that some doctors seem to think I am. Meeting wonderful doctors gives me such a feeling of hope for the future. I know now that there are some excellent physicians out there, and once the BC CDC takes the heat off doctors trying to help Lyme patients, I think there will be loads of helpful doctors waiting to look after us all.

The doctor at the clinic was so nice and sent us to the lab at the hospital to get tested. That was when we discovered that my line wouldn't aspirate blood (ie: we couldn't pull blood out of the PICC Line). We could flush through saline just fine, but no luck with the blood. So of course, the way you solve all simple, little problems in Canada is to head to the ER. It is very frustrating for everyone (especially the staff and patients!) to have to wait so long for non-emergency care, but it's the only way to get something done reasonably quickly. After a long wait, the put some TPA into my line, which is a kind of magic fix-em & clot-buster. It takes an hour for the stuff to work, so there was much knitting and audio-book listening. Well dose #1 didn't work, so they sent me home that night with another dose in my line, in the hope that my line would clear up.

The next day...still no blood. "Hunh? This is funny...It usually works." was the response. I hear that a lot though :P. So I had another dose (hours of waiting occurred in-between first seeing the IV nurses, and getting the TPA, and then them trying to take the TPA out. I condensed all that waiting into a few lines...lucky you guys!). The line turned out to be good an blocked, and we couldn't get any blood for the blood-test, or for any other reason. The doctor was kind and a good listener, and suggested that we should pull out the IV line. This usually wouldn't be a problem. They'd just put another one in and I'd be find to do my meds. But with no doctor in Canada willing to put in a PICC line for treatment of Lyme disease, this wasn't an option. The truth is these lines are expensive, and I have been sick for so long and it costs so much money; how would we get another line? We explained the situation: how we couldn't get any help here, and that this IV line was the only way I would every get better. He let us go home, telling us that someone would get in touch tomorrow about coming in for a dye-study, to see how the line was blocked, and if they could fix it.

It was much to our surprise that the next day we found ourselves in the imaging waiting room. The whole afternoon had a shiny, surreal feeling to it, as they kindly settled me into the clean room, politely asking which PICC line we'd like (so of course we chose the purple and blue one! ~kidding). They even managed to put the new PICC line in the same site as the old one, something they apparently hadn't done before. They injected a little dye to help them see inside my body. Then there was a lot of poking in my arm with guide wires and several staff powwows before they got everything in order and slapped a clear dressing over everything. They sent me home with tons of extra dressings and such.

I was resting peacefully at home for about 6 hours after. The pain creeped up on me very slowly until I could not ignore any more the agony in my chest. Pain thrumming in my chest, making it difficult to breathe. I tried to articulate how I was feeling, but all that came out was slurred, broken sentences. So it was back to the ER again, with our mind on the possibility of a blood clot. I have to chuckle, even with the pain, as we explain to the intake nurse, that, no, we haven't moved in the past 24 hours, and our contact information has remained the same.

Pain escalating, radiating from my chest around the back of my ribs, down my legs. Belly cramps. The pain was beyond my control, something that despite all my peaceful breathing I couldn't think myself out of. They didn't know what was wrong there, but gave me an IM of ketamin, a pain drug/low-dose anesthetic, which calmed things right down.

It wasn't until we got home that we had time to put a couple of repeating patterns into a more succinct hypothesis. I have had severe chest pains before after having contrast dye. After MRI's, after my CCSVI therapy. The symptoms, the way the pain traveled, was almost identical to those other times. So hopefully this means no more dye for me. It has always made me feel ill inside. Tight in my chest.

But on the bright side of all this, I have a Canadian PICC line poking out of my arm. A PICC line that was put in here means they have to take care of it. Wow. A true miracle, yes?

Oodles of fun

2011-12-18T18:21:00.000-08:00

Two fellow spinners from The Linden Singers, Judy and Tegan, came over this afternoon for a wonderful adventure in spinning! I have never had the opportunity to spin with other spinners, or fellows to gush over fibre with, and wow was I missing out. This craft is individual, but meant for sharing and giving and exploring. It’s the most enriching part of the experience! I learned so much in an afternoon, and got to try spinning on Tegans’ teensy ‘Ladybug’ wheel, which official makes the Cowichan Spinner the ‘elephant’ wheel (voluptuous and graceful!). Judy gave me a bunch of fantastic local fibers to play with

a tussah silk mustachio (a belated tribute to Movember perhaps!)

I haven't felt inclined to write much lately. The words usually pour from my fingers, they hit the keys running. My mind disengages and I turn on my heart to find what I want to say. But I suppose I am just a little bit tired of being optimistic, tired of hoping, and marking the minute changes in my health on a weekly basis, sick of still being sick.

I try to remind myself that a silk worm hatches into a moth. Forming a chrysalis is hard work, and very important if a silkworm is ever going to grow up. They spin tiny threads around themselves into a safe haven, and once they are sealed up in this sleeping bag of their own design, they wait. Patiently. Quietly. Knowing that something important will happen after. Their whole being undergoes a great transformation, and only when they are ready do they break free of their cocoon, and dry their wet wings in the sun. Then they are free to fly and explore and do all the complicated moth-things that we are only beginning to understand.

When all of ‘this’ is all finished, my life will ‘move on’ to some place. I supposed it will take awhile for me to understand what ‘this’ was all about, and how it will affect my life (although I am beginning to see how). In the meantime, I need to be patient for wings take a lot of energy to grow.

pupa |ˈpyoōpə|
noun ( pl. -pae |-ˌpē; -ˌpī|)
an insect in its inactive immature form between larva and adult, e.g., a chrysalis.

Pre-Birthday Dinner

2011-11-10T23:50:00.000-08:00

laughter around the makeshift dining table

We're going home so soon, which makes me sad. We had a wonderful early birthday party with all the family here tonight. We had pasta dinner with Gramma, Phil and Nancy, who drove down from the lake district. Very tasty meal...but of course it was...how could it not be with all the best foods; tomato sauce and rice pasta (and Daiya cheeze!). Heaven. Both sets of aunts and uncles, my big cuz Evan, Gramma, and of course Mum and I.

love at first bite!

We had fun picking the cupcakes for tonight's birthday celebration. I will really miss KindFood, and their delicious vegan/gf B.L.A.T sandwiches, not to mention the goodies. There is something so exhilarating about being able to order a sandwich just the way it was written up on the menu, without substitutions or missing ingredients!
I am feeling quite low on energy these days, but somehow I found the strength to eat a cupcake. I know. We are talking about huge expenditures of energy, and a deficit of calories, but I did my best :p. We all survived. Somehow teeheehee.

Yoga with G :)

2011-11-08T15:15:00.000-08:00

Even though I've been away from home, I have still managed to get in lots of sweet yoga time. Chair yoga is often called 'Seniors Yoga', although of course it isn't just for one age group at all. I asked Gramma if she'd like to join me in a yoga class, and together we did a full pranayama (breathing), asana (poses) and hand mudra practice, with myself leading the class. I had written down all the poses we do from videos Michelle (my yoga instructor) and I created during our classes. The video of us doing yoga was a bit quiet for Gramma, so I led us through the practice. I was tricky at first, trying to speak calmly and remember to remind others about posture and when to breath and stuff, but it was very rewarding. I think I'd like teaching yoga very much.

shoulder series with the dynamic duo!

Mr. Max Comes to Town

2011-11-07T20:40:00.000-08:00

trying to make Maxwell laugh!

Jenn and Andrew and Mr. Max came down to visit over the weekend, and the family had a lovely afternoon together. Max is the sweetest little dude, and he's growing up so quickly. It feels like he's ready to take off running or mountain biking any day now :P. I love it when he chatters away to himself in a conversational tone. I wish we didn't live so far away from everyone...I am getting so used to being able to see everyone all the time. I quite like it!

Amy left this morning and on the train and is en-route back to Ottawa. It was so amazing to be able to visit with her this weekend. I miss my big cuz already. She is just a few clicks away, I know, but Skype just isn't the same as being able to see someone clearly and have their voice normal, not robo-tized :P.

What with all this relaxing and afternoons of chatting, I have been knitting up quite a storm! I am becoming a regular knitting machine. I have finished so many armbands that I'm kind of losing count. The latest colorway I've titled 'Seascape', in reference to the waters off Vancouver Island, and make me a wee bit homesick. Our stay is drawing to a close though, so I'm sure I'll be singing a different tune in a few days.

Seascape

Travellers by Train

2011-11-05T20:30:00.000-07:00

mint and vanilla

Cuz eating a vegan/gf cupcake with a smile :P

It just so happened that Amy was able to come down from Ottawa and visit for 2 days this weekend, as she never has classes on Monday. Yay! She took the train down and arrived yesterday evening. We visited a little bit and relaxed at the condo, and then Amy went to stay at Gramma's house, just down the block! Amy and I had girl time today when we went to pick up early-birthday cupcakes at Kind Food. Yay for girl time :). It is very exciting to be sharing a birthday (almost on the right date!) with my family, because we usually live so far away that this isn't possible. I have spend a few birthdays with Amy, but obviously I'd love to see her everyday, and on my birthday :). She's like my big sis, and I love that!

I feel much more like my "normal" sick self, now that we have been here a few days and the affect of the elevation of flying have worn off. I feel a bit sluggish, like I'm dragging myself along the bottom of a river with each step.

hot pink & lime green

monet's garden

Something I am enjoying a lot of lately that doesn't involve a lot of energy on my part is knitting. I have knit several PICC line armbands since I have been here, and they are already up on my Etsy Shop. At this rate I am going to run out of yarn before we get home! Whatever will I do? :P

My big cuz also helped me out with a rad impromptu photo-shoot for my latest PICC line armbands!

wonder-woman! showing off the Tahitian sunset armband

Colorful World

2011-11-03T16:31:00.000-07:00

Even if the sky wasn’t overcast, the brilliant changing leaves of gold and rust and blushing red would outshine the sun. The trees are on fire, the rain collaging the streets with leaves. It is a very different kind of beauty here than the perpetually green West Coast.

The new antibiotic I’ve been taking is supposed to be gentle, although it doesn’t feel that way from the inside of my body. I slept terribly last night. My body feels incredibly hot and cold all at the same time, so half the time I am unsure why I’m trembling. Aching in joints I almost forgot existed :P. It’s been a take-it-easy-slow-down-and-drink-tea kind of day. Gramma came over before I was up, and we all had food together (breakfast for me, lunch for everyone else), then tea, of course. Tea is a religion in my family. I consider it just tea snobbery (specific ratios of milk to tea, temperature, how much the water boiled, and brand of tea all enter into this ritual). I drink any color tea at any temperature with the tea bag left in all afternoon, a horrific practice in the eyes of my family I’m sure. There is something about that flavoured water that turns the most ordinary people into die-hard British tea lovers (snobs). Perhaps in 50 years we will find out that there is something in black tea leaves that makes it super addictive, like nicotine in tobacco. I am sort of joking but sort of not. I love my family, and their quirks :P.

Relaxing days for me generally involve a great deal of knitting. I finished off a size extra-small armband today in 'Tahitian Sunset' -hot pink, orange, and lavender stripes (these colors actually go…I know it sounds like a strange combo, but they look amazing together). Already have it up on my Etsy shop. Talk about being organized, hmm?!

First Sale!!

2011-11-02T19:43:00.000-07:00

Last night I got my first order for a PICC line cover through my Etsy shop from a lovely gal in the Mid-West. Needless to say I was over-the-moon jumping-up-and-down excited! I had only finished the armband that day, and hadn’t even had a chance to put it up on Etsy, so that was very quick turn around. I can’t wait to hear her feedback about the armband. Although I wear them myself, and am very self-critical about the product, it will be wonderful to get another opinion from a fellow PICC line user! The armband is already in the hands of Canada Post and on its’ way to a new home. I suppose this officially makes me an entrepreneur! Wow.

lace stitch panels in "Spun"

I know non-knitters could argue that most knitting stores sell the same products, by the same companies and most often in the same popular colorways, but that never feels like the case. There is always something new and exciting, and it would be impossible to remember all the different kinds of yarns available in specific colorways. Spun Fibre Arts is a Burlington store specializing in natural and organic yarns and fleeces for fibre artists! It was heaven. There was a lot of stroking as we strolled/rolled around the store. It just so happened that they had several colors of this cotton/elastic yarn I love to make the IV armbands from in new and exciting colors, and on sale. I can’t find it in any of the 3 knitting shops in Victoria, so I picked up three very beautiful colors; mixed hot pinks, mixed stormy blues, and a teal/purple/lavender/stormy blue striped mix. Hopefully these will soon be transformed from ordinary balls of yarn into something rather unique! I was excited to find a few more stereotypically male colors (blues), because until now I have had mostly stereotypically girlie colors, and some gender neutral ones. I would love a blue armband myself, however, so I am careful to not always assume that blue/pink are for boys and girls, respectively. That is so last century!

prettttttttyyyyyyy

An equally exciting stop was at KindFood vegan/GF bakery & cafe, where we picked up 4 delectable cupcakes: Mint, Coconut, Chocolate, and Vanilla.

los cupcakes

Oh my goodness. We are saving them for after dinner, which is killing me. Fancies of icing and sprinkles are dancing round in my head. I was a tad bit excited about the whole experience. I've decided that at some time in my life, I am going to open a GF Vegan bakery & cafe, although I will need to firm up these plans with an idea of 'when & where'.

outside the famous KindFood

Nothing could be better than the combination of cupcakes and yarn. Paradise.

Delish!

2011-11-01T20:40:00.000-07:00

Sucks to have to do dressing changes on my PICC line, when I’m on vacation! No fair! I wish we could take a wee break and let my arm breathe, but obviously that can’t happen. The little end cap where you ‘plug-in’ a syringe wouldn’t come off yesterday, no matter how much Mum twisted. We went to a home nursing place this afternoon, and asked one of the nice nurses to help unscrew it. Thankfully they managed to get it off okay. I can’t imagine what we would have done if they couldn’t undo it. We also had yet another chance to talk to nurses about Lyme disease, an opportunity we never miss. The nurse’s sister had Lyme, so she was very understanding. I also got to show off my PICC line armbands to an appreciative audience…they thought it was a really cool idea. Maybe when I’m back home I can approach a home care centre about carrying the covers…that would be very cool, don’t you think?

Happy Vegan Food Day everyone. In honour of this very special day, we went to Kind Foods vegan/GF bakery with Gramma, and Mum of course. They were all sold out of cupcakes, but the cookies were delicious!! I also had the most amazing B.L.A.T (fake bac’un, lettuce, avocado and tomato) sandwich on fantastic wheat-free bread. The bac’un was indistinguishable from the real thing, from the texture to the taste. Sensational! Oh my. I could eat that every day, and I never really liked real bacon. WOWWOWWOW.

I have been feeling so hungry inside. It is not usual for me to feel odd sensations, or lack of, in my body, which changes as frequently as the battlefield of Lyme in my body. It is so odd to suddenly feel this way, after not wanting to eat for so long. But no complaints. I feel like gaining weight would make me feel better all-round.

Flying Higher

2011-10-27T19:56:00.000-07:00

hand mudras for sleep

We are in Toronto, to see my Lyme doctor who is going to the ILADS conference, and the rest of my family, who live in this general area. I am so drained after the flight.

Toronto is HUGE, and I am feeling very small-town right now. I miss being able to look at the top of buildings without craning my neck all the way back.

The flight went well enough, although the altitude always makes me feel very sick. I have a killer sore throat and am having trouble swallowing. Nothing a little oregano oil won't nab, but this is an all-time quickest infection rate. I missed choir practice last night as I was feeling so low and my throat was in so much pain.

The benefits of sitting in the bulk head on the lovely WestJet were felt as soon as Mum and I started doing yoga. Because the computer was with us, we could do a full asana practice, and it was like the lovely Michelle was with us too! Made the flight that much quicker and more peaceful.

Yoga Together

2011-10-26T19:23:00.000-07:00

After seeing how much I enjoyed yoga, and the benefits I had from it, Mum decided to start doing the practice with me. We did a full practice yesterday, which was fun to do together...girl time! Before the afternoon yoga practice I was feeling rather restless and couldn't settle to any activity, and was fatigued and exasperated, which seemed like a good time to bust out some yoga moves. I felt energized afterwards, which made my day so much better. Hopefully we will be able to practice ever single day of the week, 3 times with teachers, and 4 on our own. Won't that be fun!

Full Day

2011-10-19T21:49:00.000-07:00

For not sleeping very well and having low energy, I think I put a serious amount of energy into this wonderful day!

The library has just got in a whole whack of really awesome knitting and spinning books, which I have eagerly been reading this week. I am particularly enthralled with the "Fleece and Fiber Sourcebook", which describes in depth over 200 different animals which produce fiber! Pretty pictures. My only regret is that this isn't a touch and feel book, like "Pat the Bunny"! Alas.

Michelle and I did an exhausting yoga practice today, although it was well worth the fatigue to be able to relax so fully afterwards. My whole body feels like it was untied from a bunch of stressed knots. Lovely. Michelle works me hard, but that is because she has such faith in me...knowing that I will try my best, while listening to my body. I cannot thank my amazing teachers enough for their belief in me, in my healing. Such positivity is infectious, and is multiplied exponentially in the heart. <3

I have been feeling so low lately. Weak inside, starving, but eating just fine now. It is frustrating, because in I feel as though my body is crying out for nutrients, although my blood work looks the best it has in years.

Wednesday is choir practice with the Linden singers, 2 hours which leaves me breathless, literally, and also because I am so enthralled with the whole experience. I recently learned that 2 other members The repertoire is challenging and interesting, and our upcoming holiday concert, with the theme "Christmas American Style" should be great fun for everyone, regardless of religious belief or age. "From the spontaneity and infectiousness of the tunes of Irving Berlin to the grandeur of a contemporary American Magnificat." There is definitely something for everyone, even if you are an atheist, like me. In case you are in town, and interested in hearing some sweet holiday music, the concert takes place on Saturday 3 December 2011 at 7:30 PM at First Metropolitan United Church at Quadra & Balmoral. Tickets are available through me or another Linden singer, of course, or at Ivy's Bookstore, Munro's Bookstore or Long and McQuade Music, and at the door. Just something to bear in mind :).

I was feeling really down today, and I'm not really sure why. Maybe it was the weather, but I was feeling very listless and couldn't settle to anything all day. Distracted, but not thinking about anything else. Could be from lack of sleep...some days are just like that, I guess. I spun for a wee while before my shower and that really perked me up. I hadn't spun in a little while, because my legs have been rather exhausted, and I'd prefer to practice yoga than spin when I have to choose. Hopefully tomorrow, with a good restful nights sleep, I'll feel more like myself.

Just a phase

2011-10-08T18:27:00.000-07:00

I have been on the IV antibiotic meds for about 3 weeks, and was actually feeling relatively fine. No drop in my energy level, unexplained symptoms, or increase in symptoms, until Wednesday. Poop! Fun's over. Now we are getting back to the real work: herxing.

Herxing is basically a few hours to a few days/weeks of pure hell, where your symptoms increase exponentially, and all the horrid crazy symptoms that are usually kept in check come out to wreak havoc on daily life. I was feeling rather faint and tired during the day on Wednesday, and a little less than peppy when Michelle came for our yoga practice. I could feel myself being sucked down by an invisible force, which I know to be borrelia (Lyme bugs) in my body acting out. They are attention seeker...and love to keep their hosts on their toes.

I am really enjoying singing with the Linden singers...the music is challenging and the people so lovely. There are two others spinners in the choir, and I am hoping that we can all get together and spin! One gal brought me some chiengora, or dog fur (the stuff that falls out when your dog is shedding!). It is super soft, like angora bunnies (hence the name), and much much warmer than wool, in fact, so warm that you have to mix it with other fibers. Wow. I am really excited to get working with that, but not sure when my next chance to hit the wheel will be.

After I got home from practice on Wednesday night, I started feeling that something was very wrong. Trembling inside. Cold and hot at the same time. And in a lot of pain. It was just the start of a bad herx. I felt like I might have an infection, something not Lyme-related, because of the chills and fevery feeling, but nope, just good ol' Lyme in action :P.

I am having this weird things going on with food. I am so hungry all the time, but whenever I try to eat, I just can't. Like literally can't put food in my mouth without feeling anxious and awful. I feel like bursting into tears every time someone mentions eating. I am not really sure how to explain the feeling, because I haven't really experienced this before and it is confusing. I think it is aggravated by the fact that I am super nauseous, and sporadic feel like I am going to be sick, but thankfully am not. Basically I have eaten a lot of potatoes over the past few days, which is usually my least favorite vegetables. For some reason mash potatoes with olive oil went down better than anything else. It's just a phase, hopefully.

Fall Lunch

2011-10-02T14:42:00.000-07:00

Can you believe that midterm exams are almost in full swing? Not like I'm in school or anything, but when I tried to plan a weekend luncheon with some friendlies, it turns out that people are scrambling to study already. Hasn't even been a full month of school. Wow. Having said that, and snickered a bit that friends are hitting the books, I would love to be baking study-group cupcakes, and complaining how much my textbooks weighed.

Angela and I went out to lunch at "The Reef", a Caribbean restaurant with rocking food. Curry veggies and jerk tofu wrapped up in roti for me, and quesadillas for Angie. Fantastic! Nice to get caught up on everything in each others lives, and see the latest knitting projects!

I has been so bitterly cold these last fews days. 13 C doesn't sound too chilly, but on the West Coast that means take that number and subtract a whole lot for windchill and damp cold. I was in full winter regalia. And still found it within my stubbornly sun-loving heart to complain of the cold. Nothing new there. I feel like if I could just be walking around, I wouldn't notice the cold so much, or I could stomp my feet to get warm. I really want to get walking. I have been sick for so long...so lame!

The yoga does warm me up nicely. It feels really good to stretch. I am getting better, and the gals even introduced a few new moves this week, which is exciting! My hips are very weak...where there should have been muscle and fat at my side is now a hollow place. Lack of strength in my hips does make it hard to walk, or balance, so hopefully by strengthening there I can get walking that much easier and faster!

I only have to take this one kind of pill for 3 days, and then I take a break for 30 days. The catch it that I take 8 doses of this mediation per day. 8 little yellow pills that taste of chemically death. While I'm on these, I feel particularly awful and exhausted, something I didn't realize was possible. I thought it couldn't get much more terrible than doing IV meds twice daily, but for some reason these oral meds just push me way over the edge. Talk about frustrating! They also make me super nauseous, although for some reason today's curry lunch hit the spot. Ironically, whenever I am feeling super terrible, I crave curry, and usually feel better afterwards. Wouldn't it be sweet if I was craving the ayurvedic healing powers of turmeric and curry powder, coriander and ginger? Interesting thought, no?

Start the Ball Rolling

2011-09-19T21:59:00.000-07:00

this ball won't run away from me!

After what felt like weeks of spinning (really about 2.5 weeks in all in all), I finished the incredible batt of mohair/wool fiber that dear Arleigh sent me, dyed by a friend of hers, Leola! What is more, I set it warm water (to make sure it wouldn't twist back on itself!), stretched it for awhile (as it was super dee duper curly!) and today finally put yarn loops on the back of a chair and then proceeded to put the yarn into a ball. Wow that was a lot of work! Sheer the animal, wash the fiber, pick and card the individual fibers, dye the fibers, spin the fiber, set the fibers, and ball. I only had to do 3 of those things. Imagine if you followed the process start to finish. How rewarding! I am very pleased with how it turned off...for singles (meaning only one strand, versus many strands making up a thicker yarn) it is very evenly spun (meaning that it is almost all the same thickness!). I have no idea what it's going to look like knit up, so I just can't to figure out what I can make with it and cast off!

top view

Unlike a lot of mohair yarns, this one is very soft and dreamy, which has mostly to do with the animal and perhaps from where on the body it was harvested. It is mixed with sheep wool too, which would help add softness. The yarn has a wonderful sheen to it, and it almost sparkles in the light. Spinning handspun yarn is supposed to be one of the most enjoyable experience out there for a knitter. I can't wait to report back all the wonderful bonuses of knitting with your own yarn. All that treadling and sweating paid off enormously, and I feel very proud of myself. I feel that in the coming weeks/months I might have to ease back on the amount of spinning I'm doing per week, because the IV meds exhaust me.

I am already noticing icky affects from the medication. The most annoying being that I am very tired and lethargic, and that my mouth tastes of rubber bands and deceased mice all the time. Because IV meds enter through the bloodstream, and because my dosage is so high, I can taste the medicine through the tiny spider webbed blood vessels in my tongue and nasal passage. It would be much more fascinating if it wasn't my own mouth. These vessels are very close to the surface in this area...maybe that's why it can be tasted? I wonder if anyone else has noticed this while taking Clindamycin? I did a bit of research about it and a lot of people mentioned a bitter taste. This seems a bit non-specific to me, because for me it so very clearly tastes like rubber bands...as though I have been chewing on them in place of gum. My naturopath said that people who can taste the saline and heparin flushes (done before and after IV) have trouble detoxing. I found this an interesting principle and wonder if it also applies to the medicine, or maybe it's just caused from a side effect.

Yesterday when I had yoga class with Barbara, I had to take lots of breaks because I was so exhausted. Bringing my arms and legs up made me feel so weak and faint, something I haven't been complaining about in previous weeks. I was so exhausted after the practice, rather than feeling energized. This is disappointing and frustrating, but hopefully as my body becomes more adjusted to the rhythms of the medication this will improve? It will be interesting to see what happens when I am off the IV meds for 3 days (we 'pulse' 2 weeks on, 3 days off).

The Far Reach of Dear Big Brother & the Octopus

2011-09-18T19:30:00.002-07:00

Another day with a mix of sun and clouds. As long as there ratio of blue sky to clouds leaves room for the sun to poke through, it's a good day. We went to a Smart Meter rally at the legislative buildings. All homes in BC are going to have a Smart Meters installed, a program which started in July, and is projected to be finished by the end of 2012. It isn't really an option, and there was no discussion with the public before this decision was made. Scientists are pointing in both directions about whether or not EMF's (electromagnetic field) causes negative health problems. For me, this is an important question, but having the right to choose to have a Smart Meter at your house or not is equally important right now. I have the choice to smoke, or not to smoke, to eat healthy or unhealthy foods, to ride a motorcycle, or not to, and I used to have the choice to use wireless technology or not to. If you feel something is damaging to your health, or could be, like smoking, the foods we eat, or riding a motorcycle (I just picked 3 hot topics, but you could interchanged them with any risk-related choices), then you have the right to opt-out of these things. It's a choice, and my family, and many others, would like to choose to not have a Smart Meter. It should be that simple, but it's not.

We received some lovely letters from BC Hydro, ensuring us that there was no danger from Smart Meter technologies, and that even the Health Minister assured citizens that there was no risk. As if the Health Minister has never been wrong! Remember, there used to be no health risk in smoking, handling mercury and asbestos, or the cocaine in cough syrups, to name a few.

If the health affects don't concern you, or you think the science isn't all there, reasons of privacy might convince you that the Smart Meters aren't such a sweet deal. The devices transmit information about the goings on in your house...it doesn't take a genius to judge from your power consumption when you are home, or not home, what kind of appliances you are using, how often you get up in the night...that sort of thing. Power companies can remote shut off your power, or turn off specific appliances. By closely monitoring our power consumption, power companies can decide what times to charge more for power (when people are using it the most). And the only thing standing between your personal data, and hackers, is encrypted user data. Ann Cavoukian, The Privacy Commissioner of Ontario assured residents that, "The best response is to ensure that privacy is proactively embedded into the design of the Smart Grid, from end to end." Thank goodness BC Hydro's "privacy principle will remain the same". We're being well looked after. Big Brother is making sure that we are safe, we'll pay less, we'll save energy, and they'll fix outages sooner. It sounds almost too good to be true!! Oh wait...it is.

recycled side panel

waste-not waistband

On a lighter note, I also got to work on my Octopus Tee-shirt Skirt this afternoon! I am nearly finished, and am really pumped with how it turned out. I always felt the octopus tee shirt would make a super awesome skirt, because putting an octopus on any article of clothing obviously increases its' awesomeness ten-fold. I love that I found a use for the legs of my old jeans (after turning them into shorts!). I saw the legs sitting in the cupboard and thought, "Oh my. How fetchingly that color goes with my octopus!", and figured placing side panels would give me some much-needed stretch and only add to the stylish nature of this getup. The waistband was crafted from the bottom of a faded, stretchy black Jacob tee, which was much too small and closer to gray in color than black anymore. I got many years of loving out of that top, and now can use it to make a few more waistbands. As always, would love your feedback! I have only basted it together, so the final sewing will happen later! Can't wait to rock my new look in the street of Victoria. And hopefully on my own two feet (as if I needed another incentive to walk, but skirts look awesome when their human is standing!).

It's alliiiiiiivvvve!

Reflections in a looking-glass pool

2011-09-17T22:08:00.001-07:00

Underwater life animated on a historic building

I thought that the days of summer were truly over, but today the sky was an exhilarating riot of vivid blues, stormy grays and white. A mix of sun and clouds, with a touch of rain, and the occasional brilliant-eye-squinting ray of sunshine. Dad and I went down to the Inner Harbour, walking along one of the few paved paths in Victoria that is in a moderately tranquil location.

Regal Parliament, resting on borrowed lands

We walked along the smooth path, taking in the sights like any good tourist. It is noisy in the Inner Harbour, with the sea planes taking off towards the distant mountain, motor boats tootling around, people laughing and skateboarding, biking, dogs.

no school like zee old school

The one thing that you must listen hard to find, to separate it from the roars of city life, is the sound of the ocean, persistently lapping against the raised concrete path. I wonder what this place looked like before the shoreline was smoothed out and raised up. Were there beaches paved over, and did they use the smooth pebbles littering those ancient beaches to decorate the gray cement? A small piece of the bay is still intact, where you can see the remnants of crystal pools of green water, which carve holes in the rock-face. There are no big waves that rock into the Inner harbour any more. Not since the extension and creation of the breakwater, a few kilometers away. The water feels almost stagnant, until some boat or plane disturbs its' surface. Just remember that this water is also full of raw sewage, one of Victoria's very dirty secrets. Yes, that's right, in the historic capital of this great province, our toilets flush right into the once pristine coastal waters. Pollutants don't belong here. Not anywhere.

looking-glass pool

We strolled across the Blue Bridge, a first for me. I've never crossed from Esquimault to Victoria on foot or wheels. From there, Solstice Cafe, a haven of organic and homemade (many vegan!) delights, is just a few stoplights and a hill away. Steaming cups of rich cocoa, and a granola bar. Isn't that the definition of culinary heaven?

history unknown

I have always been fascinated by this building front on Pandora. Only the historic front remains, an eerie skeleton, a face with no body, a lid without a box. Ironically someone painted a few blue pacman on the front. In the good old days of my freedom with strong legs and a healthy sense of adventure and liberty (always willingly accepting serendipitous situations as they arrive), I used to think to myself that the bodiless building would make an incredible picture, or a sweet backdrop for a photo-shoot. Finally, camera in hand and blue sky to boot, I captured the haunting beauty of the place on ~~film~~ a plastic memory card.

I was so exhausted when we came home, although I am trying not to show it. We started my IV antibiotics a few days ago, after almost half a year without them. The medicine is caustic, and burns my heart and veins as it enters my blood stream. I feel weighed down with sickness, as though my bones are suddenly filled with lead instead of 900 mg Clindamycin.

When in sickness or pain, try chanelling your frusteration into a creative outlet.

Don't speak the anger in your mind and body, but instead try to look at the flipside, turn everything terrible into something good.

An example? Today I am really suffering, and I feel like crying with the pain of the medicine going into my heart and neck.

But someday, when I'm a doctor, and I decide to put a patient on a drug with a biting, bitter, derisive and acerbic personality, I will be able to understand their suffering.

I am being given the power to heal, through the knowledge of suffering I am receiving.

A further plus side is my extension tubing is 14 inches long, leaving me plenty of room to knit!

Once you start moving in a postive frame of mind, everything become lighter and warmer in my mind. I hope it can do the same for you.

I channeled my pain in sewing this afternoon. I have many incredible animal-print tees from the Sierra Club, that Dad used to bring home for me, some of which I have had since kindergarten. The sky blue and navy octopus shirt, which is too small for me and a bit faded, has just been recycled into a trendy skirt. Cut off the sleeves and neck, added a bit of denim on the sides from a pair of pants I cut off into shorts, and created a waist band from a faded black stretch shirt. I will post pictures when I have it fitted and on ma body! Should be pretty sweet once it's done...and all recycled...how cool is that?

Up to Batt!

2011-09-13T20:01:00.000-07:00

My family doctor (who deals with my non-Lyme illnesses, if I ever get such a thing) suggested that because I have never had a psychological evaluation, and have been sick for so long with many neurological symptoms, that I should see a psychologist. He was very clear that he didn't think I was crazy, just because I had Lyme disease, but anyone, especially a young person, who suffers a chronic illness probably suffers because there life has been changed so much. So bright and early this morning we went to see a psychologist downtown. The verdict: I'm officially not crazy. Yay! I suppose that just means I have a whole whack of serious neurological problems, which is not so much fun.

We went window shopping around the lower Johnson St. area, where a large portion of eco-friendly and locally owned businesses. It's kind of uncomfortable doing yoga in lingerie with under-wire and lace (it's fun to be girly!), so I was looking for an alternative to that. And just browsing.

After resting for awhile in the early afternoon, we headed on down to Knotty By Nature, the incredible fiber arts store in Victoria. I was looking to create a little hand-spun accessory for my lovely yoga teachers (can't say what in case they read this!). The amazing and talented artists who own and work at KBN helped me pick about 5.5 oz of fibers that would blend well together: local wool, alpaca, and mohair, hemp, and bamboo fibers. KBN has drum carders people can use to blend the different fibers together into a batt, something easy to spin with. There are also wheel for customer use, and looms to rent or use there. It's a pretty incredible place. This was my first art batt, and I'm really excited to start working with it. Dreamy softness, warmth, incredible caramel-y brown colors. Mum helped me turn the handle of the drum carder machine in order to blend the different textures together in order to have a more uniform yarn. I am exhausted from all this work and moving and thinking, so I am looking forward to just resting tonight.

Rush to Last Days of Summer

2011-09-11T20:26:00.001-07:00

After making half a dozen plans to see Harry Potter 7.2, my Mum, Angela and I finally made it to the theaters. It was incredible!!! I can't believe that there will be no year-long wait for the next film, that this really is the end. How strange it is that kids nowadays can just pick up the books and read them one after the other? The anticipation before the release of each book and movie was so intense, and made me savor every word. I suppose there will never be another world like Harry Potter, and that's just fine by me. I don't mind reading the books another dozen time (honest! I have them on audiobook and have probably read each more than a handful of times).

I decided that versus writing about yoga 3 times a week on my Lyme blog, which I feared might bore some of you, I created a blog about Yoga entitled "8 Limbs, 1 Chair" (referring to the 8 branches that make up yoga!). I am very excited to begin recording my thoughts after each practice, and to document my journey and improvements. Michelle has created some chair yoga videos, and I would encourage those you in wheelchair, or with limited mobility to give it a try. You just might surprise yourself. I am improving already; my arms and legs raise higher and with greater ease and assured movement, my breaths are deeper and come more naturally. Has it been two weeks? Hardly, because the teachers were away 2 weeks ago on a retreat. I practice on my own almost every day, if not the asana (poses/positions), than the 3 part breathing exercises and the meditation. Please check out my new blog and hopefully I can inspire you to try yoga yourself!

Sleeping, Singing, and Sharing

2011-09-08T17:59:00.000-07:00

The zombie finally got to sleep! My new record is four straights nights without sleep. Does anyone else remember that House episode where this girl doesn't sleep for almost a week, which is apparently the longest you can go without sleep before dying? Maybe that episode was a bit hysterical...but don't worry, I wasn't worried about this. I was just damn frustrated that I could meditate all night and not fall asleep. I slept fitfully, and for just a couple of hours, but still, I feel a wee bit more human today. Just as well, because I was starting to have a strong desire to hunt down humans, and kill and eat them. (hold on...that was a continuation of the zombie reference. work with me here. zombies eat ppl right? or is that vampires? oh lord...who cares?).

Last night was the first official practice of the Linden singers. It's been really hot here, so upstairs in the First Met church was sweltering, even in the late evening. There was a meeting...I didn't really understand what was going on because it was so formal. I took notes tho :). The people are all so lovely, despite our age gap. I've always gotten on very well with adults, even as a young child, so it didn't seem strange to me. Hopefully I can recruit some more young people for next year...that would be nice. I am singing soprano. Oh yes, you read that right. I feel like a mouse being pinched every time I hit a note an octave about middle C. It's not a pretty sound, but it is a ~~sound~~ noise none the less. I used to sing alto/tenor in school choir (mostly to make up for the lack of boys). Linden has oodles of tenors and basses...it's such a novel sound for me!

My friend Angela, who I haven't seen in a gillion years because we've both been away and just plain busy, is coming over tonight for pizza! It's the new and delicious GF crust from the "Gluten-free Goddess'" blog. I can smell the yeasty dough from the living room, one of my favorite smells. I'm sure it rose beautifully today because it is so hot and humid. 21 degrees in the late afternoon is just fine by me. Hopefully we'll be seeing the last Harry Potter movie later tonight. We haven't gone yet!!! Almost out of theaters too,

I listened to the radio interview my mum and I gave the other day at CBC. The radio show is called "On the Island", a morning favorite. Check out Sept 7th program, "Living with cougars, honouring Campbell, Lyme Liberation treatment and memorial trees", to listen to our interview. We used to listen to a bit of CBC in the morning rides into school, and I recognize Gregor Craigie's voice! Very tranquil. Another opportunity to spread the word about Lyme disease, and the Liberation therapy...hopefully this knowledge can help others.

I also created a chair yoga blog today, called "8 Limbs, 1 Chair", which will document my healing journey through yoga. I am very excited about this! Michelle encouraged me to reflect on my learning journey, and what a great thing to share with fellow Lymies, and people in wheelchairs! Hopefully I can inspire others to try it...who knows, it could make all the difference in your health!

Running Around Town

2011-09-06T21:56:00.000-07:00

How delicious is it to be busy while your friends slave at school? Mwahaha. But in all seriousness, I am very jealous that I am not going back to school this September. What would I give to complain about the weight of my backpack and the cost of books and the bad/late profs like the rest? Good things come to those who can be EFFing patient enough to get them!!!!

On a humorous note, by big cuz Amy showed up to school at 8:30 sharp, only to learn that school starts tomorrow. Hillarious.

Last week, dear Bonnie Henry - the BCCDC's resident expert hypocrite, with a sickly sweet voice like Professor Umbrage - was on CBC radio, assuring the public that doctors are very knowledgeable about Lyme disease (when from her OWN statistics, it states that 6 out of 10 doctors surveyed didn't know Lyme disease was a reportable illness). Of course, these downright lies and ignorance of their own statistics anger my mum (and I), who wrote to CBC, informing them of this error and Mrs. Henry's falsehoods.

click the pic to enlarge CDC's Lyme findings

Around this same time, an article about the affects of my CCSVI procedure came out in the Sooke News Mirror. CBC interviewed us both this afternoon, inquiring about the results of the Liberation procedure, and why we decided to take the risks, and responding to the controversy. It was very interesting. Hopfully it will air tmr morning...sometime after 7:30 am. Guess I'll have to wait for zee podcast version to listen!

Out interview today was so early that we could go for lunch! We went to the Solstice cafe, an organic cafe downtown, with many vegan items. The soups are always vegan, and there were samosas too! The espresso brownie, and the GF carrot cake (both vegan) are to die for. Heaven! If you're from Victoria, or ever visit, this is one very cool and always scrumptious stop!

Right next door to the Solstice, Sarah Kramer, vegan chef extraordinaire and cookbook author, has opened up the worlds' smallest vegan curio shop! Clothing, toys, chocolate bars, jewelry -> all %100 vegan! We had fun browsing and chatting with the lovely Sarah. She is my vegan hero...and her cookbooks made life tasty for me again!

Our goal was to really tire me out today. I haven't slept in 3 days, and it's really starting to make me feel awful. My brain feel raw and numb, like a sponge that has been squeezed too forcefully. I have no idea why my insomnia has been so bad this past month...this 'not sleeping all night' thing has happened often. I'm not stressed or thinking about things at night, I'm not in pain I can't handle, I'm exhausted but just can't turn the light of my brain off. Very frusterating...but at least

~Life has a way of returning lost items for you, when you least expect. I found nail polish, a gel pen, and a piece of popcorn in the back of my chair.

Hand-spun Local Mohair/Wool Skein

2011-09-05T17:45:00.000-07:00

Indian spinner head adaption w/ niddy noddy in foreground

I feel like I have finally gotten the hang of spinning! I spun up the delicious 150 grams of local mohair and wool that the lovely Arleigh sent me, from up island. To recap, I met Arleigh through a serious of wonderfully serendipitous events. Months ago I posted an ad on Kijiji, asking if anyone had a spinning wheel that I could borrow, rent or have. I thought, who knows, maybe someone has a wheel that's sitting around in an attic or garage? Incredibly, I connected with Arleigh, a retired spinner/weaver/artist, who very generously gave me me her indian spinner head treadle machine, with the original sewing machine head (it's an ancient Raymond), and a beautiful niddy noddy (something to wrap the finished yarn on).

The 50/50 mohair/wool single (meaning just one ply) yarn I have created it incredibly beautiful. A friend of her dyed the fiber in variagated teal, bottle green, clay brown, and natural white, each color blending seamlessly into the next. This creates a striped of pooling affect when knitted up. I have to soak the freshly spun yarn in some water to stop it from curling back on itself, but then I will be able to knit with it! I have no idea what I will make, or what the finished yarn will knit up like...fingerless gloves, hat, wristlets? OH the choices are endless. Anyways, I am over the moon about my smooth spinning, and pretty even thickness. There aren't too many lumps and bumps, like my first few skeins. A thousand thank you's, dear Arleigh. You lit the spinning spark in me, and I feel that Spinning and I are going to be great friend for the rest of my days. <3

Paused in the process of spinning. The yarn on the spool reminds me of a sandy shore and sea.

Linden Singers!

2011-08-29T17:24:00.000-07:00

Earlier this week, I auditioned for the Linden Singers, a local choir directed by Dr. Gary Froese. Dr. Froese led the choir at GNS in my grade 9 year, and I learned so much under his direction. I was excited to join Linden, even though I knew that all of the members were much older than me. The same day I found out I had made it into the choir, there was an Thursday evening workshop, a crash-course of some of the major works the choir will be learning. One of the pieces was Vivaldi's 'Gloria', a dramatic and melodic work, which the Victoria Ballet will be dancing too!! I am just so excited. There was an all-day workshop on Friday, but unfortunately, I couldn't make it to all of it. I am still very pumped about the music! Everyone was very friendly and welcoming, surprised that someone so young just showed up. I missed singing very much...I have always sung in school choirs. It feels unnatural not to.

I am having a lot of trouble sleeping lately, so I am not at tip-top shape. Ever since we came back from the trip to Cali, I have been having many boring, sleepless nights. I am used to functioning on little sleep, but this is getting too little for me. I have to re-read things multiple times just to ensure I am computing. Sigh.

A peaceful afternoon

2011-08-25T21:44:00.000-07:00

Who would have thought a few months ago, that now, half way through August of my 3rd year in a wheelchair, I'd be doing yoga? Certainly this beats physio (sorry cuz Jenn, but it gets really dull). Why would you want to wiggle you toes and lift your arms in an uninspired and strictly medical activity, when you could be relaxing and working those tired muscles in yoga? Yes, exactly what I realized.

I saw a very nice physiotherapist from QA (Queen Alexandra Foundation), offered to us through my SIDES schooling. Positive and helpful experience. But I was so bored by the exercises, which were maddeningly dull for a girl who loved to run in the forest and play beach volley ball. Also, for some reason, it was difficult for the physioterrorist ( teeheehee) to grasp that trying to help me by touching me only made things worse. The result was painful lessons.

My legs have been steadily getting stronger since the Liberation therapy. It's amazing the renewed confidence one can have in walking, when you can feel your legs. It is scary to try to walk when you have no idea what the lower half of your body is doing. I'm less shaky when I try to stand, and can walk about the same distance, but with renewed confidence. High heels here I come.

So Mum and I were discussing what I could do to further strengthen my legs, and in a stroke of inspiration I thought of 'chair yoga'. As soon as I said it, two thoughts were running through my head. "What am I getting myself into?" right after "Saying this aloud probably means I can do the yoga". I loved doing yoga before I was ill. Stretching your limbs in ways you never expected, or don't usually do, leaves you with a feeling of overall relaxation and strength.

I started searching to see if anyone taught chair yoga in Victoria. We are the city of the 'newly weds, the nearly dead's and the flower beds'. I found a few people who used to or do teach chair yoga (at seniors homes), but it didn't work out. I thought I would have to ask someone in the conventional mat yoga sector to teach me, when I happened to discover Michelle. She taught a teachers chair yoga class several years ago. I figured I was pushing my luck to expect her to be willing to teach a near novice student years after the fact but went ahead and emailed anyways. Boy am I glad I did. The stars really aligned on this mission.

I had my first lesson this afternoon. I was a little apprehensive, wondering if she would be able to help me while understanding all of my complications (pain and memory being the most important ones). Unfortunately - or, oddly enough, fortunately- Michelle too has suffered several of the health problems I have (including insomnia). She was introduced to meditation at 8 to combat her own insomnia, which worked wonders for her, leading her to become a teacher of the traditional 8 limbs of yoga. That was over 27 years ago. We connected right off, and shortly after meeting, I knew that Michelle could really help me, and I trusted her to work with me. Her caring, warm spirit instill in me the confidence to push myself, to try to let my body heal through yoga.

The exercises we did for 30 minutes weren't strenuous, if anything, it felt wonderful to use the muscles I had neglected, due in part to fear of pain and partly to weakness and lack of control. Breathing (pranayama) is essential in yoga, and I am very excited about this, because my lungs are so weak. After the various movements practiced together (in office chairs), we did a 10 minute guided meditation, called a yoga 'nidra' (nidra meaning sleep). Wikipedia describes it as the "conscious awareness of the deep sleep state". I gathered that the purpose was to empty all thoughts, and to fully relax the body. For someone who is always fidgety, it was such a relief to just sit still, empty my mind of all thoughts, and just be. Bliss.

Michelle, and two other of her colleges from her studio, are going to come to my house 3 times a week to practice chair yoga with me!!! I am so excited. I literally am counting the days until Monday, when we meet again. Michelle has some online videos of various yoga poses, some seated, that I can practice at home in the meantime. They are all being so generous with their time and energy. It is amazing the kindness of people that I have only just met/haven't even met yet! I was just blown away. I am so grateful for this opportunity to heal with yoga :), and especially to be working with such incredible people!

Knitted PICC line Covers

2011-08-10T16:02:00.000-07:00

I finally got together my Etsy shop. I actually did this a really long time ago, I just forgot to blog about it! My knitted PICC line covers are now available from my Etsy shop "Fresh Squeezed Lyme-Aid!". Proceeds from the shop in part support CanLyme. I am really stoked to be sharing these. I designed them for myself, but realized they were just SO comfortable that I couldn't not share. Your line doesn't wiggle around or rub. Tight, but not too tight, stretchy but no ridiculously. Keeps it shape, even after washing! And, of course, hand-knit by yours truly! I have a few already made up, but am happy to make one to your measurements. Please check it out :).

Last Visits!

2011-07-26T19:40:00.000-07:00

miles of bougainvillea along the main road

highway by the beach

Today was very busy! We drove into Newport Beach to have my dressing changed, which didn't go to badly. It feels nice afterwards to have a clean dressing, although it stings while it's being vigorously cleaned with alcohol. Yesterday the lovely Nurse Francis put the line in in one of the consult rooms...just her by herself in about 15 minutes. Then I was whisked off downstairs to make sure that the line was put in the right place (in my chest), which is was, and then I was free to go! That's the way it should be done! It really is just a glorified IV line, so having lots of people there while it's put in now seems silly. I'm glad she is so good at her job! My arm is very grateful!

Just saying, my new purple nail polish from WF's look awesome with the PICC line cover! Now that is coordinated, don't you think?

Later this afternoon, Roy came down by train from LA, and we headed to the beach! There were clouds in the sky...probably a first since we've been here. It helps to cut some of the glare though, which is nice. My arm was only hurting a very little bit, probably thanks to the strong pain meds I was already on (fentanyl patch). I could enjoy myself on the beach without having to act like I was fine. I feel so strong and have so much energy after the Liberation therapy. Maybe it helps that I am in such a beautiful place...no gray days to bring down my mood :)

amigo!

ciao!

We're leaving in a few days to go home, so I'm so happy to have got to see Roy before then! It is so complicated for him to travel up here, and who knows when that will happen! We went out for Italian food which was super tasty (just my luck they had one GF vegan dish in the whole place...and it was delicious!). All in all, it turned out to be a much better afternoon than morning, obviously.

As excited as I am to be going home in a few days, I will miss the sand between my toes, and seeing friends. Who knows...there just might be a heatwave in Victoria to welcome us home!

Beach Chic ;)

2011-07-24T19:32:00.000-07:00

knitting socks at the beach yesterday

At the beach for as long as possible these past few days.The umbrella makes it so Nancy and Mum can sit in the shade while I can bask in the rays (with sunscreen of course! I'm not trying to ask for skin Cancer here!). My arm is healing nicely. Already that 5-day-PICC-line is already a very tiny hole in my arm, which is just fine by me.

just another tourist on a near-empty beach

Walk Long Road

2011-07-22T21:35:00.000-07:00

tide rolling on the rocks @ Doheny Beach

We moved a few days ago into another condo in the complex where we were first staying, and this time much closer to the water. I can actually see the ocean! It's very peaceful.

Brilliantly sunny and warm, blue sky overhead at the beach today. The sun and the water met almost seamlessly at the horizon. It's very nice not to have my the PICC line in for tanning reasons :P. No more funny lines from the armbands or dressings. I could seriously get used to living here, and coming to the beach every day. I suppose it wasn't all a bad thing that we have to stay 4 times longer than we intended. It's like a vacation.

sunning in comfort

I walked from the edge of the picture to the lifeguard post

I feel pretty good today. And strong...being able to feel my legs makes it so much easier to walk, because I know what they are doing! I walked out very far on the beach, in search of the perfect patch of sand to plop down on. My secret goal was the waterline, but I couldn't make it that far. What I wouldn't give to put my toes in the water and splash around! Mum and Nancy both say the water is warm, enjoyable, and not too seaweed-y. I am doubtful that I would classify the water as warm, but this is a lot further south than the beaches I remember from living in San Francisco. Who knows! And I guess I won't be finding out anytime soon. Sigh. I wanted to so badly.

healthy pink toes!

Rolling on the Edge

2011-07-20T19:00:00.000-07:00

whale swimming in concrete

In a seaside town, you are never too far from a dreamy vista. Tranquility is a short walk away. The coastline of the Laguna beach area is dotted with rocks, which appear small and insignificant, perched as we were on the top of the cliff. The sky was a perfect baby blue, with low white cloud cover hovering near the horizon. Perhaps it is raining far out to sea? The path we chose was relatively flat and well-paved, a smooth ride.


"between the devil and the deep blue sea"

The waves roll to the beach in gentle swells, leaving a peaceful cove for the paddle borders to drift. The warmth increases an overwhelming feeling of vacation laziness exponentially.


brilliant status flowers compliment the sea tones

I could seriously get used to all this warmth and overdosing of vitamin D. No wonder the government made the (misguided) decision to put vitamin D in our milk! Coming from the cloudy summer days of Victoria to this weather, I can see that we were seriously lacking the power of the sun up north!

seashore gals!

We haven't been doing very many touristy things beyond visiting the various beaches, and Whole Foods. I was shocked to see their abundant vegan ice cream section. It wasn't a dark corner with a few small pints. This was 3 full shelves of flavors and styles I hadn't even heard of or dreamed of. My immediate reaction was one of surprise and excitement, but after looking a little while longer, it seemed extremely obscene. Do we really need this much selection, that much choice? I miss Planet Organic, where you can hear people talking at the bath and body section in the bulk foods area (or in other words, across the store). Bigger isn't better, I guess is what I'm thinking.

I miss home very much now. Although the air by the water smells fresh, I know its polluted, and I have to wash off the dirt of city-life each night.

terraced cliff leading to the beach

Native Foods, a Natural 1st Pick

2011-07-17T22:13:00.000-07:00

We had to leave our condo for a few days, as it is not available for a few days. In the intervening time, we went inland to a comfortable hotel. Its hotter and dryer the further you get from the ocean, but this location has other benefits.

Of course, when I e-serached out vegan restaurants in the area, I just about lept from my chair when I saw all the incredible options. There are VEGAN chain restaurants!! Many of them. And other independent bakery, restaurants and cafes, all with the "soul" purpose of being cruelty-free, earth-friendly and delicious. This is heaven. And its proper title is "Native Foods".

Eager Beavers

thinking...

"Native Foods" is an all vegan, organic restaurant, serving a wide range of sumptuous eats for over 17 years. I have used some of the recipes by the original owner and founder, Tanya Petrovna. I was intrigued by the wide demographic of people eating at "Native Foods". Forget the stereotype that all vegans are dirty hippies and social misfits. There is no profile for a vegan or vegetarian. Its very telling that a recent study found 3.2% of all adult Americans to be vegetarians, about 7.3 million people, of whom a million are vegans. These figures have nothing on Indian, where 40% of the population are vegetarian. How cool is that?

I was so excited to visit a place where I could eat EVERYTHING on the menu, and without needing to ask 20 questions about the ingredients, its preparations etc. Check out their menu here! It was so impossible to decide what sounded best. But I felt pretty sure I was in a mood for one of their legendary burgers. I have never eaten a conventional Oklahoma bacon cheeseburger, and as this combined so many things I do not eat/have food sensitivities to, I opted for this mother-of-all-burgers. They make their own fake 'meats' and some of their cheezes, all the sauces and toppings are house-made too.

for real.

My reaction? NOMNOMNOMYUMMYYYY! It was so tasty!!!!!!!! Out of the world. The "bacon" tasted just like the real thing, and the cheeze was stringy (Daiya) and the vegies crisp and fresh. It was to die for, ironically enough. My aunt, mum and I all shared an 'Aztec' salad, which was so beautiful I didn't want to dig in (almost).

festival in a bowl

Another exciting bonus of an all vegan restaurant was that I could have a little taste of everyone meal. Mum and I ended up swapping burgers, half and half. Mum ordered the 'scorpion' burger, which was a blackened tempeh burger with chipolte sauce. WOW.

sumptuous

Nancy tried their Very Voluptuous Veggie Pizza which is topped with "Creamy pesto, grilled veggies and kale, roasted pumpkin seeds with a balsamic drizzle." Their house-made Parmesan was dreamy.

perfection on a plate

All in all it was the best meal I have ever had at a restaurant, vegan or otherwise!! What a blissful evening. The burger was so filling that I actually couldn't finish it. I am not used to eating foods that are so jam-packed with protein (ie: really filling). Heaven between a fluffy bun. If you are ever in the Southern California or Chicago area, this is a MUST stop. It was rated the best veg burger in the area. If you have ever wanted to try something vegetarian, but were worried about how delicious something made from plants could be (do you call vegetables 'rabbit food?')...well then this place is for you!

The peanut butter parfait we had for dessert was finished off so quickly that I didn't take a picture. But rest assured it was beautiful and amazing! I have never had a parfait, so how cool was it that my first parfait was vegan?

I forgot all about my PICC-line-less arm, which is just feeling a bit abused.

It was a perfect evening.

Record Line

2011-07-16T20:30:00.000-07:00

absorbing rays

Although my arm has still been giving us some trouble, we have been to the beach almost every day. Doheny Beach is one of the most beautiful beaches I have ever been to. Sand oozes serenity. I am starting to get a tan (but its mostly on my right arm, because of the direction of the sun while I'm sitting facing the waves). There is a real community feel by the seaside. Can you imagine how wonderful it would be growing up in a place where the beach was your playground? Oh wait, I kind of did. But the beach in Alameda wasn't nearly as clean, the water scummy. There is very little seaweed on these beaches, which is nice for the abundant swimmers. In a rhythm as predictable as the waves, children and adults alike scream as the waves crash over them lightly, not strong enough to sweep anyone out. The sea is a puppy, playfully biting at the heels of laughing people.

castles abandoned to the siege of the tide

I want to be out there, splashing in the waves, but its just out of reach. It's too far for me to walk, especially because the sand hampers my movements. Many beaches have beach-wheelchairs, but this one isn't one of them.

strollers, with surfing paraphernalia

People walk around town shirtless and shoeless, and its clear from everyones lack of reaction that its no big deal. People who have clearly just come up from the beach, like girls in sandy skimpy bikini explore the shops casually.

Surfing made its debut on these shores. On this very beach, actually. Building a breakwater and a harbour put an end to these activities, but further up the coast, people still surf on gentle waves. Nothing hard-core or too dangerous, although I can see plenty of rocks just below the surface. It looks like there might be a reef out there, a little ways out, where the water changes abruptly from a bottle green to deep blue.

My legs are getting stronger, on the plus side. The Liberation treatment (CCSVI) has returned feeling to my legs, something I didn't realize I was lacking. The problem with my PICC line leaking all sorts of fluid (leading to frequent dressing changes, which means its exposed to more germs, which could lead to infection) is caused from having both the CCSVI procedure and the PICC line put in through the same hole. You need a larger hole to do the angioplasty needed for the Liberation treatment. The doctors were nicely trying to save me another incision - the procedure is usually done through an incision in the groin. Another complicating factor is that I have to be on 2 weeks of blood thinners, to prevent my recently unblocked veins from become blocked again. The PICC line has to come out...shortest time for having an IV device ever; 1 week. Lame! At least when I get another one put in, I can have it put in my Left arm. We have to stay longer, to wait until I am off blood thinners so I can have the line put in without it having complications. So our stay in paradise has been extended.

It could be worse: we are near the beach!

Infinity out to Sea

2011-07-13T22:17:00.000-07:00

picking between better and be

A few nights ago we happened upon the best little taqueira in Laguna beach, possibly that I’ve ever eaten. I had a salad last time, which was amazing, but didn’t quite showcase ‘Taco Loco’s’ specialties as much as…well…their tacos. It was a vegan paradise, with blackened tofu, potato, or mushroom, and phish tacos. Don’t worry, I plan on trying them all, and I made a decent effort of it today. Fresh, chunky guacamole and salsa, blue-corn tacos. It was pure bliss. The best taco I have ever had. No question.

After that deliciousness, nothing could be better than eating Taco Loco's vegan desserts (oh you heard me) at the beach. Chocolate chip cookies and hemp brownies. They were okay, but the fact that they made the effort to serve all vegan desserts is pretty rad.

Mother nature planned an even more awesome finale to the day; the sunset. Have you ever seen an ugly sunset? Each sunset reminds me of the importance of nature, and that every and any sacrifice is worth it to protect it. I miss all of the forests of home, the lush greens, the crystal clear skies and waters. When the half-light glances off of a bare California Coastal beach, you can almost forget that this state has way more licensed drivers than the population of Canada. Or that the orange glow of the dying sun is masking the smudge of taupe pollution just at the edge of the cloud cover. Gone are the 16 lane freeways and cities of strip-malls. Nature isn't fighting for its place in the concrete desert. All that exists is the coastline, and you when you look straight out to sea, you can't see a damn thing. It's beautiful. With this view as my inspiration, I feel as though I can reconstruct in my mind this continent, 350 years ago.

Combining my love of the dreamy music of Satie and the enchanted sunset, I put together this little slideshow, complete with authentic movies of a wave on a beach in California!

Clean, Cleaner, Cleanest

2011-07-12T18:58:00.000-07:00

clean-up

Finally my dressing was cleaned up yesterday. Its so nice to not have to feel faint and nausea every time I look at my left arm. The lovely office manager used to be a PICC line nurse, so she has been wonderful. A record fast dressing change this afternoon.

Its not that long of a drive to the office in New Port Beach. The traffic isn't even that bad. The view is beautiful...the highway follows the coast all the way, so the views are spectacular. Ever few miles, we seem to hit a town center, but the rest is houses, tucked into planted lush oasis'. Elaborate sprinkler systems snake through tangles of exotic plants, bringing a welcome drink to the thirsty foreigners. I'm sure the local fancy cacti snub such plants, looking down on the vegetation that can't survive without water from their masters, the gardeners.


freeway-side beaches

Waiting in many doctors offices in states and provinces is the perfect opportunity to strike up a conversation with other patients who understand what you are going through. In the earlier days, we had many questions for the veterans of Chronic Lyme, trying to use as much of the hard-earned information as we can. I kind of consider myself a Lyme-life warrior, not yet home from the war, but battle-fatigued, in a Babesia-induced sweat, ready to bare my teeth again at the sign of another Herx, or some other fresh terror Lyme is ready to offer. I met a lovely young woman in the Synergy Health waiting room. She was from Windsor, Ontario, of all places, suffering from what was diagnosed as MS. Aiisha is her mid-twenties. We struck up a conversation, and instantly connected because I had had the CCSVI (and she was hoping to have it), we were both young and in a wheelchairs. Her speech and movement was shaky, and reminded my mum of how I sounded at my worst. After meeting so many people sick with Lyme disease, it becomes easier to spot people who could have Lyme disease. The way someone holds themselves, the lines in their face, tensions in their hands, a haggard look in their eyes, their story that begins with confusion and a long illness and many doctors visits until the MD's pull a diagnosis out of the pocket of their white coats. I hope this procedure (CCSVI) helps her. Hopefully they can look into whether she has Lyme disease. Wouldn't it be nice to have something treatable like Lyme, versus MS?

Shortly after leaving the doctors office, I noticed my arm was wet. There was yellowish fluid leaking out of the dressing (presumably from the site). It even got all over my new knitted armband!! If there could be anything worse than blood, it would be icky fluid (hmm...perhaps this is a close second). We tried calling the office, but, just as our luck would have it, they had just closed. After some debating, we went to the ER at a nearby hospital, where we waited for a long while, before getting a call from the clinic's office, advising us to go home. I wasn't looking forward to having a very expensive ER visit for a problem that could probably be fixed at the doctors office.

The dressing was just disgusting by this afternoon, but I wasn't terribly worried. I mean, it was all covered up with a foamy wrap, putting pressure on the site. So I couldn't see it, which to my very irrational brain meant everything was fine, fine enough to go to a used store in Laguna Beach and browse the racks. 'Looking gross' isn't really a medical problem, and besides, I figured shopping would be a welcome distraction. I was just trying on some clothes when I became aware of the wetness of my arm. It was a very unnatural feeling, and when I removed my armband, I realized with a trill of terror that my arm was covered in blood. WHY does this sort of thing happen to me? It was all I could do not to scream right there in the crowded store. Paper-towels, rolling to the car, pressure on the site. It is difficult to breath or think when there is blood anywhere near me, least of all coming out of me, smelling of dirty pennies and heat.

We went back to the ER (did they miss me? clearly I was missing their company :P ) and had a doctor check out my arm. It is easier for me to remain rational in such a clean space as a hospital, surrounded by cleaning supplies, a pleasant distraction from the mess. It was strange, but the site of the incision, where I had the CCSVI procedure and then the PICC line inserted, was clean, and the blood was down my arm, caught in the gauze ring of my dressing. It was as though it leaked from no where. This is preposterous, but still, we couldn't figure it out. So now I have a moderately sterile dressing on my arm, awaiting another dressing change tomorrow. Missing the beach right now.

All that the tide brings...

2011-07-10T21:21:00.004-07:00

PINK!

Last night, instead of going to bed with cold-to-the-touch-numb-to-me feet, they were a shockingly normal color. We have taken pictures of my feet when they are a purple-bluish or red color, which usually doesn’t show up in a photo well. My feet started turning strange colors when I first became ill with bronchitis/pneumonia in 2008, at the very beginning of my serious Lyme illness. There was some talk about Renaud's syndrome, but my feet weren’t turning colors in the right order, so that was quickly ruled out. My hands and feet were always cold, but now, just 2 days after the CCSVI procedure, with unblocked veins, the warmth and feeling are returning to my limbs. It is kind of exciting…I hadn’t realize I had lost so much sensation in my limbs, if not all of the feeling in my legs. Maybe sooner it will be easier to walk. Who can say...?

It is going to be a brilliant full moon tonight. The tide is very high. Most people have seen scientists projections of what the future water-levels will look like. Its not very promising for shore-dwellers, and the major cities set by the sea. At around 5 o’clock, at the busy Aliso Beach, 20 minutes from where we were staying, the waves were coming in so fast and furious that picnickers and sunbathers had to jump up and flee the tide. It all happened so fast; one minute the sea was a few hundred feet away, and over the course of what felt like a few minutes, it was up to the sidewalk. The water came up and over into the parking-lot, leaving behind much debris and sand.

there goes the picnic

Another thing we have noticed here is how much erosion there is. It is very dry at this time of year, and although bougainvillea and cacti cling to sandy banks, not much is holding back a slide in the wet-season, or preventing the houses perched precariously at the hill top from falling into the sea. Cement and mesh is often tacked to the sheer ‘sand-faces’ (what probably was a rock face a few years ago). I am used to drought from living in both Northern California and then Vancouver Island summers, but because the landscape isn't 'green', it feels so much more serious. I suppose it is just as well that less people live down here; less demand on limited water resources. But I guess flooding fields to grow almonds and other veggies use up plenty of water in the region. Maybe its the warm weather coming into play, but everyone here seems very 'relaxed' for California. The pace of life doesn't seem to hectic. There aren't that many people living here, the congestion no where near as much as San Francisco. The air is cleaner down South too, which I only hope lasts.

pelicans riding the (air) waves

There really is something to the saying that a sea breeze cures sickness. Maybe its just that it feels so damn good listening to the waves, letting them lull you to sleep. I think I read something about the fact that minerals are beaten out of the rocks by the waves are released into the air, which makes the air feel so good to us. When we realized that all of the sand (and parking lot!) at Aliso Beach were quickly flooded by the waves, we decided to head to another spot. It is fast becoming my local favorite. The beach is nearly deserted, and pelicans swoop by every now and again, landing with a 'plop' on the waves, ungraceful sitting as they are delicate in flight. Pelicans look so large close up, because they shrunk in size in my memory. They are practically the size of Condors!

I've begun knitting my PICC line cover. How deliciously normal it was to sit on a lounge chair on the beach, knitting, while the sun glares off very pale Canadian skin. I was a little cooler than I'd be willing to admit in the auditory world (e-confessions are fine of this nature...), hence the sweater, scarf, and sarong. But undaunted as the good little Canadian spirit and pride in me can be, I was determined to bury my feet in the sand, and watch the sun twinkle behind a cloud. Hey! - a twinkle is more than we can get in Victoria for several weeks...I'm not complaining!

Watch out!

I feel like a 4-year-old when it's time to leave the beach. "But I don't wanna go" *insert a pout here Amy - my cuz - would be proud of*. The beach has a kind of magic that I am wont to give up. It seems like as soon as a plunk down in the car and start brushing sand from between my lime green toes that I have returned to another plane in the universe where I am very ill, and people have to take care of me. On the beach, my imagination is free.

Post-Procedural Knitting :P

2011-07-09T21:38:00.000-07:00

Well, I feel A LOT better today, or more specifically, I don't feel as horrible as I thought. My arm doesn't (hardly) hurt at all -yay!- and I feel undeniably good, although I can't say exactly what that 'goodness' is, only that it is a new kind of feeling for me. I can get USED to this :P.

I had the idea of making stylish PICC line covers. Burn gauze is u-g-l-y, no matter how well it does the job. Of course, I did want to visit a yarn shop anyways, so going to 'Strands' today was perfect. It was kind of hard for me to pick up and examine all the colors with just one hand (i know!! 2 hands are better for stroking zee soft yarns!), and I might have used my sore arm a bit more than I meant to.

Browsing through the rainbow

I found the most dizzying array of colors, and a cotton/elastic yarn perfect for making bands that stay up. Its an aquamarine-green color that reminds me of Saturna Island's legendary bottle-green coves. I also fell head-over-heels in love with this blueberry-frozen-yogurt colored yarn, made from sugar fibers (the plant!). It was silky soft, but cool to wear like cotton. Perfect yarn for a tank-top! The lovely lady who owned and worked in the shop put the skeins onto the swift (kind of a cross between an umbrella and a clothes line, for holding yarn) and then using a baller put it into a nice squarish ball for me, easier to knit with. Have to wait til I get home tho, for needles in a lacy size.

deserted

Driving along the water to the mission town where the yarn shop was, we saw the most beautiful and uncrowded beach next to the train tracks. Of course, being so close to the road, we thought the car noise would be way too loud for us to suntan (I was tanning) on the beach. But the proximity to the loud waves meant that the sound was drowning out, or complemented, the waves crashing against the rocks. The 'SHHHHEEEE OUSH' sound of the water pulling rocks back towards the sea, like a greedy monster, is such a tranquil noise. Its like the sea and rocks are in deep conversation. It is enough just to sit on the warm sand in the late afternoon, although yesterday I wouldn't have said no if we could have figured out a way to get me closer to the ocean.

so close to the waves...

Willows', My favorite beach in Victoria (and the largest patch of sand for miles around) looks quite minuscule next to the thousand miles of coast line. I know not all of it is white sand, but usually there is a patch of pristine, if populated, beach between high cliffs and rocky shores. I do miss Victoria very much, even though this sunshine makes a very welcome change from cool cloudy days of summer at home. It is exhausting to lie in the sun, the rays beating the energy from me, but I love the feeling of the warmth on me. Its very peaceful while I am sitting with my toes in the sand…its only later that I feel like the strength has been sucked from me. It would be difficult living here all the time (not that I want to). I miss home, and my friends.

relaxing

Because the clinic is closed on the weekend, I couldn't have my fresh PICC line dressing changed. It should be changed the day after, but now it's not going to happen til Monday. There is a little blood, which I am worried about. Can't wait for it to be made all sterile and white again.

A Slit

2011-07-08T04:13:00.109-07:00

The drive to the doctors office was the perfect opportunity to work on my tanning, while knitting, and listening to an audio book. Multi-tasking is the ultimate form of distraction. Yesterday we had our consultation with the surgeon, basically a preview of what happened today. I usually don't want to know what they are planning on doing to me, because then my overactive imagination starts churning out the most gruesome picture, and I can feel my heart-rate start to beat faster.

Twilight on the bluff

The condo is very comfortable, and feels like it stepped out of the "beach bungalow" set of a campy movie, classic down to the carpeting. A high cliff overlooks the beach across from the condo complex. There is an elevator down to the beach, but it doesn't go all the way, so there is a incredibly steep ramp to get down to the sand. If we managed to get down and retain control, we'd never be able to get me back up it. We stopped in the parking lot of the beach/park to watch the sunset for a few minutes yesterday. Its always nice to end the day with the peaceful glow of a pink sky.

Most of today was spent inside the clinic. I had the CCSVI procedure, and a PICCline put in. It doesn't hurt very much now, but I am not supposed to use my arm, which is what is most irritating! Its in my right arm, my dominant, which will make everything more annoying for the next however-long I have this line in. I can only hope it doesn't last too, too long (whoops! did I say that?).

Surgeon Dr. Arrata, explaining arm-choice

It was decided that versus making the incision for the angioplasty in my groin, that the hole in my arm that my PICCline would be fed up through, could work for both procedures. One less cut. The catch was they could only do the CCSVI treatment through my right arm, even though I really wanted my PICCline in my left arm. It wouldn't have been the end of the world for me to have 2 incisions, but still, I am happy with one less.

A port-o-catheter looks like a wonderful idea, too, from a doctors perspective, although until they have had a needle poked into their chest, they can't fully appreciate how serious a decision it is for a patient to agree to have one. Luckily, Mum understood that I would never have a port again, and that a PICCline would be just fine, thank you very much. We have been waiting for months to get this line put in, hoping to do both procedures at the same time. Finally after having no antibiotics for months, I will be able to start them again. Oh boy!

The theater

The clinic is very large, the kind of place where you might end up getting something else done if you went to the wrong operating theater. But they seem very organized, so this idea didn't occur to me until just now, thankfully.

Some people have difficulty understanding that when I say I am in a lot of pain. I realize now that the tendency is to use words like 'pain' where often times one means 'aching' or 'discomfort' or 'soreness' or 'tenderness'. Its kind of like the word love. The ancient Greeks had 5 distinct words for kinds of love; agápe, éros, epithumia, philía, and storgē. Selfless love (Christian), romance, attraction, friendship, and affection. Don't you wish you had those awesome ancient designations when you want to tell someone "i love you", just not that way :P. ~

Helping, reaching, holding, moving. People hands gripping me are hotwhitepain, and I can't speak. Its like my brain has been shut off and all that's left, all that I can think about, is the agony, that I can't even shout out to tell them to stop. While I was in the operating theater, the nurses kept grasping my arms and legs, in an effort to move me, even though both my mum and I explained I would probably pass out from the pain of this and be disorientated upon awakening. I am fine to move by myself, if people let me move at my own speed (which isn't that slow).

I blacked out before they had even started doing anything to me, so of course I was terrified when I woke up. To find yourself on an operating room full of blurry strangers who are prepping you for surgery is terrifying. I tried to explain to them that I didn't understand what was going on, that I wanted them to stop. Below the surface I was hysterical, repeating over and over again, like a calming mantra "What's going on?", "What's happening?", "What are you doing?". I was mostly ignored by the nurses who would occasionally throw out an 'everythingisokstaycalm'. I was of course terrified to find my arm in the hands of strangers who were scrubscrubscrubbing with iodine in preparation for the surgery.

Apparently, most people who are having the CCSVI done, have an incision in their groin, and then the angioplasty tubes (is there a word for them?) are sent up to your neck through this whole. Luckily, because I was also having the PICCline inserted in my arm, they could use the same whole to do the CCSVI procedure through. One less cut = sign me up! The drawback was they could only do the CCSVI procedure from my right arm, meaning my PICCline had to go into my dominant arm. The line can bleed if you are doing activities with arm that has the line in it, and can be uncomfortable, which is why I would have preferred my LEFT arm. Alas...

The people in the operating room became a little confused, before the surgeons entry, and also prepped my groin area (they said 'groin' but it was more like hips). I of course was super confused by this point, as the nurse told me that I was having a PICCline put in (no mention of CCSVI in operating room), and that 'everythingisok'. I was at a loss of why they would have to put an incision in my groin in order to place a PICCline?? Naturally, I felt like these nurses were mistaken, and perhaps that they even had the wrong patient, so I asked repeatedly if they could go chat with my Mum and the doctor again, because this didn't seem right to me. It wasn't right, based on the information just given to me. By this time, I was so panicked that I was starting to have difficulty breathing, even with the oxygen. Near hysterically yet silently crying, I just kept repeating my wish that they would a) tell me what was going on, and, b) double-check they were doing the right thing.

Just before the doctor began to do the procedure, I passed out again, this time for what I suppose was longer. I woke up to one of the nurses hitting me on the head and shoulders, causing terrible agony to resonate through me with each blow. I suppose she was tapping me hard on the head to see if I was awake or not (OMG some people are just a little insensitive. i can't say the other word I'm thinking because young lymies might read this...). The nausea from the horrific pain almost bawled me over, although I was lying down by this point. I am a weak bunny strapped down to a table, overwhelmed by the field of sterile blue, with no idea what is happening.

The only thought that does not occur to me is the only one that might have had any chance of stopping the proceedings, which would have been to sit up. Although on reflection, they might have forcibly restrained me, or given me something to calm me. Neither would have been a great option.

Everything is prepared and in its place, except me. An injection of lidocaine to the arm, and this should be the last thing I feel touching my white-hot arm. I am on quite a heavy arsenal of analgesics; Fentanyl patch (50), hydro-morphone, and IM ketamine (80) at night. Even these things do not drown out most of the pain. Perhaps it was that my body is used to these sorts of pain meds, or the doctors misjudged my weight, but the shot of lidocaine in the arm didn't cut out the pain of the incision, which was very sharp through all my terror. I was now beyond petrified thinking that they are cutting me without anesthetics as punishment for the trouble I have been causing in the operating theater. I tried to say out loud something like 'I can feel that' or 'That hurts!', but I am not sure my lips were obeying the edicts of my brain at this point. I assume they weren't, because they didn't stop, or ask me what was wrong, or tell me again that everything was OK - even though it wasn't.

When I finally was returned to the recovery room, trembling from the emotional and physical exertion, plus the pain, I tried to explain to my mum what was going on. But by this point, the breathing problems that had started in the operating room (after the injection of contrast dye) were starting to make black spots appear amid all the sterile white of the curtained room I was in. This has happened to me before, although I forget to mention it, that the contrast dye given during MRI's or x-rays has made me feel as though very strong hands are pushing downward on my chest, making it impossible to take a breath. I tried to convey this to the nurses, but I am not sure what I managed to say, because a few minutes later I was having some very strong pain meds put through my new PICCline. I was lost for a few minutes in the peace of strong medication, and by the time I resurfaced, my breathing difficulties had all but vanished, the dye pushed deeper into my system.

normal colored hands

When I was about ready to go, I was touching my legs gingerly as I was slipping on my pants. I cannot explain what felt different about them, but there was an odd sensation in them, that it has taken awhile to find a word for. I suppose I noticed for the first time in along time that there was a feeling from my touch, that it wasn't just the numbness I had known for so long. On closer inspection, and with prompting from Mum (who knew what the procedure could do), I also noticed that for the first time in years, my hands and feet were warm, not hot and clammy, nor ice cold and unmoving, but a regular 'I'm-not-too-hot-nor-cold' feeling. Lukewarm. And not purple/red/white/blue, but a fleshy peach color. This was so surprising!

I had no recollections of any of these proceeding at all, as I was discharged after a few hours, and was eating some bland foods in the car. It wasn't until hours and hours later, with an emotionally unsettled feeling in the intervening time, that these memories, clear as anything, came back to me. I was lying in my darkened room, alone, and in pain, and I am not sure if it was because I had finally calmed down and was beginning to relax, or perhaps the fresh bouts of pain brought on the old memories. I just know I was crying hysterically again, and trying to tell my mum and Nancy that the nurses had hit me (which was what I remembered most vividly), then the rest of the ordeal following. Where did these thoughts come from? How come I can't remember what I ate for dinner, or what we were talking about 3 minutes ago, but remembered all the traumas of the OR. It's not fair. Perhaps the memory was seared into my mind because of the shock of the experience.

All in all, it was a very trying day, and I plan on relaxing the rest of this weekend.

Happy Coincidence = Vistors

2011-07-06T15:10:00.030-07:00

It seemed highly unlikely that of all the places to see an old friend from Victoria, Southern California would be the place. I've known Roy since we were in grade seven (or around then?), and we've been good friends for awhile now. How incredibly lucky is it that we ended up seeing a doctor in a) beautifully sunny SC and b) close to where Roy goes to school? LA looks pretty close by on a map, but Roy missed a few connections, and it ended up taking him close to three hours to get here!! The whole day was really just a comedy of errors. It always feels like a friend has been away too long, even if its only a few weeks! We had a few hours to catch up on news and chillax, which made me forget all my anxious anticipation of uncomfortable procedures in a few days. A laugh was just what I needed...certainly the best medicine!


Waiting for zee choo choo train (not to be confused with Roy the Cho-Cho Train :P)

After such an ardous trip to get here, it seemed the least we could do to take Roy back to San Capistrano's train station. The place was very beautiful, and had a 'time of the missions' feel to it. A garden and brick oasis. The whistle of the trains is piercing...I have never heard it that close up before. I have a wooden whistle, which makes a train noise, from when I was a child, but it sounds rather comic in comparison.

You just never know when you are going to need a salad. I say it time and time again. Spinach holds the world together I tell you! Anyways, the sorbet place closed just as we strolled towards it. But luckily we even brought plates, so the four of us could tuck into salad, modern-picnic style. It was a perfect end to the day...very peaceful.


Salad at the station

I am still very exhausted from traveling, my bones aching terribly, but I'm trying my best to just ignore it and smile. The beauty of Southern California is very different than my Northern childhood home. There are patches of hills and shrubland that lie as undeveloped fire-hazards. Houses don't cover every square inch. There are cacti galore, and some lush vegetation, although the amount of water used to keep it like this must be extreme. Perhaps its just my original view, but there seem to be less SUV's and more littler cars than the Bay Area. People walk around the towns in bikinis or trunks and barefeet. Its something out of a postcard, or straight out of a set of "Bay Watch". I think I could get used to the heat, and lack of sweaters needed.

Down the Coast

2011-07-05T16:15:00.070-07:00

It has been an exhausting few days. We arrived in sunny Southern California, to get a PICC line and the CCSVI procedure done. In my anxiety, I feel all the dirt from various terminals on me, no matter how many times I was my hands and clothes.
The boat trip over to Vancouver was fine as usual, if maybe a bit louder with a lot of happy travelers. I am in a great deal of pain, and feeling very anxious. The feeling of hot jolts of pain coursing through my bones is making me quite fussy, unable to sit still of settle on doing anything. I really just want to stay home and not do anything, except maybe keep knit my multi-colored socks.

Patient herons, in the marsh beyond Tsawwassen ferry terminal

We ended up coming back down and sitting in the car, watching the sea through the glassless windows. Although it is very loud in the hold, at least the sound is constant, a steady roar of engine and waves that is easily drowned out by the calm reader giving voice to "Atlas Shrugged". I'm on a classics binge currently, and was in the mood to be cheered by some jolly works of sci-fi, my Ayn Rand on my iPod, a paper copy of "Brave New World". Pure literary bliss. It has never been difficult for me to keep the plots of many different books in my head, so I almost always have a few on the go. I especially like reading books that complement each other, in theme or style. Makes for quite inspired reading, and interesting insights.

even in summer, Mt Baker is dipped in snow

Upon debarking from the ferry, newcomers are greeted with the picturesque views of the almost pristine breakwater, container ships offloading, the peaks of mountain dipped in snow, farmland, billboards, a jumble of oxymoronic images.

My Aunt Nancy met us in Vancouver, and we spent all of today traveling. An early departure, and much moving around (yes, I know in a wheelchair you don't have to do much physical work, but just looking at everything and smiling makes me feel faint with fatigue) has left me greatly weakened. I hope that the medicine I will start in a few days will give me more strength, but I highly doubt that it will work wonders that quickly.

We're staying in the Laguna Beach/Dana Point/ Newport Beach area of Southern California. Our drive along the coast was most enjoyable, and the sight of so many white beaches and baby blue waters cheered me greatly. Any beach reminds me of happy times in my childhood in the Bay Area, always playing or walking by the water, using the ocean as a landmark for finding my way around places. We have already looked into which beaches have beach wheelchairs and boardwalks, so there are many options we can visit. Across from our condo, there is a bluff, below a beautiful beach, which I look forward to exploring. Or just lying in the sun, listening to the music of the waves.

Veggies galore!

We stopped at Whole Foods on our way home, and I was in a vegan/wheat-free paradise. I ended up ordering a sandwich of BBQ tofu and mixed vegetables, which was to die for! Where could I ever order a vegan sandwich at home? The answer is at chez moi, and no where else. Needless to say, although I was almost too exhausted to eat, I made short work of this sandwich, sitting outside in the sun outside of the grocery store. Pure bliss.

Crispy Chrunchy Cookies

2011-07-02T16:13:00.001-07:00

The very best and oldest vegan restaurant in Victoria (and only all-vegan bakery!), Green Cuisine, had a fire a few weeks ago. Keeping my fingers crossed that they will be open again by the end of the summer. In the meantime, I thought I would celebrate my love of GC by baking some cookies from their cookbook of "Best Gluten-Free Recipes". I altered the recipe quite a bit, as I am wont to do, but they turned out to be the best darn cookies I have ever eaten. ~~Period.~~ Exclamation point! Perfection, in a carmely-ooey-gooey-crispy cookie.

For all those who just balked at the words "vegan" and "gluten-free" (and may I throw in "sugar-free"?), please, please don't be so quick to speed-read the rest of this post! These cookies will change your baking perspective. They will revolutionize the way you dip cookies in milk. Cooking without the pesky wheat, eggs, dairy and cane sugar, leaves room for more healthy and delicious ingredients, such as brown rice and oats, agave, and olive oil. Unlike a lot of what we might call 'health-conscious' baking, these ingredients are probably things you already have at home! You can have your cookies, and not be stuffing yourself full of 'junk' food. It can be done! Go out on a limb with me, and bake these. Bet you can't eat just one.

Perfect golden brownness

The Perfected Chocolate Chip Cookie

preheat 400 F

* A note about flours: If you don't happen to have rice or oat flour, simply take rice grains or oat flakes and put them in a food processor (a blender might work...never tried that) and pulse it until it become 'flour' consistency. Voila! Wheat-free flour was never so easy!

Ingredients
3/4 cup oat flour
2/3 cup brown rice flour
1 1/4 cup oat flakes
1 1/2 cup rye flakes or more oat flakes (for something totally w-f)
1/2 cup coconut
1/2 cup almonds (or other fav nuts, 1/4 cup fav seeds)
2/3 cup dark chocolate chips
3/4 teaspoon baking powder
1/2 teaspoon baking soda
1/2 teaspoon salt
opt: 1/4 teaspoon xanthan gum (in place of gluten (found in regular flour), not called for in original recipe)

2/3 cup olive oil (or liquid oil of your choice)
1/4 cup rice syrup (or local honey, for a non-vegan version)
1/4 cup agave (or more honey or maple syrup)
1 tablespoon vanilla

Measure out and mix all the dry ingredients. Add the wet ingredients to the dry, and stir. The resulting mixture will be very crumbly and dry, so don't worry. Oil or line a cookie tray. Squeeze/shape the dough into balls as best you can and shape them on a cookie tray, then flatten them.

Bake at 400 F, for 9-11 minutes, until golden brown. Wait a big for cookies to firm up once removing from oven, then transfer to a rack to cool.

Best nibbled with a glass of icy non-dairy milk. Freezes beautifully, so you can bring them out for special treats!

(For a Oatmeal raison variation, subsitute raisons in for chocolate chips, and add a 1/2 teaspoon of cinnamon, and a 1/4 teaspoon of nutmeg (or a quarter of a nutmeg nut, grated.)

Bubble Tea Bday

2011-06-30T13:14:00.024-07:00

We met at the best bubble tea shop in Victoria, The Dragon, in China town, celebrating my friend Sarah's birthday! The 'bubbles' can be best described as the texture of gummy bears, which look like fish eggs and taste like sweet rice pudding. Its certainly an 'acquired' taste, something you either love or hate. Luckily most of my friends love the fruity teas, so we meet here often in the sunny weather.

Just about everyone is home for the summer now, so it was nice to see all the people I hadn't seen in a long time. Most of my friends have been in school abroad, others globe-trotting, full of stories of their adventures. We sat cramped around a table, conversations looping across and over each other, in our scramble to hear what everyone has been up to. Its a comforting chaos, the sort of thing that happens whenever we get together, even when we were in middle school.

I felt quite exhausted after just an hour of talking, and the girls were heading up to the mall a few blocks away, so I left early. Every little thing seems to take so much energy out of me. Soon I'll be back on the IV meds...which will hopefully pull me up out of this downward spiral. We leave in a few days for Southern California to see the doctors there. Although the though of traveling makes me ill with fatigue I know it will be best in the long run.

The key is calm

2011-06-27T17:33:00.000-07:00

After all those months of practising the same difficult passages over and over again, and probably driving my family crazy with the endless metronome ticking, and the whispered ‘One-e-and-a-two-e-and-a…’s, the piano recital was tonight. Usually, many people end up not being able to go, but it was a really full house. The end of year concert is in a peaceful church in Metchosen, which has a grand piano. Its got quite impressive sound, which reverberates nicely in the wood-floored room. The touch was very hard, which most people commented on. You can even see my arms trembling in the video, my legs struggling to push down on a very high pedal. Note to self, wear heels next time.

Its nice to hear such a sampling of works, and relief to be able to share the music that one has spent so long perfecting. Its like carrying around a secret you're itching to tell someone. Music is another language I am lucky, I never get nervous before a concert, but I can tell from the look on some peoples’ faces that this is not the case for them. I can’t imagine all the ‘owls’ in their tummies right before they press the first key (My friend, Jess, termed serve nerves as ‘owls’, used when she is more nervous than just having ‘butterflies’ in her tummy haha).

This year, there seemed to be a lot of modern and romantic-era pieces. I added to that by playing Debussy’s “La fille aux cheveaux de lin’ and ‘Reverie’, two very popular and dreamy pieces. He paints with tonal imagery, the way Monet splashes a riot of color across one of his impressionist painting, vivid in color, yet indistinct enough to leave room for our imagination. Obviously these pieces aren't perfect, but I adored them enough to hope people would overlook a few errors here and there. Those big darn octaves. Yikes! I can streeeettttcchhh a 9th quite comfortably, or without the burning in my tendons, but a 10th is nearly beyond me. Usually I can settle right into the octave position in my sleep. I know exactly what that stretch of 8 keys feels like...its the practicality of playing this that is more difficult haa.

Debussy broke all the rules, and followed his ear and heart, versus the static and formal rules of composition. Now its very clear why teachers are so obsessed with their students learning scales; how much of a nightmare would it be if the arpeggios didn’t come second nature? The notes seem to float off my fingers by themselves (it wasn’t like that in the beginning; it was more like a sticky mess than flowing music).

My lovely students Lisa and Emma came with their families. Lisa played on of my favourite pieces, “Song of Twilight” by Yoshinao Nakada. It is very apply named, because the fluent, enchanting nature of the music brings to mind visions of early evening, in a Japanese garden perhaps, cheery blossoms falling lightly onto a clear pool. I was so proud :).

Posing with one of my friends & former student, Andie

Tea for two, with a side of Nostalgic Pie

2011-06-18T18:05:00.000-07:00

My wonderful friend Jessica, is back in town, after much musical-globe-trotting, and schooling abroad. Jess is a bright light, quirky, bubbly and a very talented violist and singer. She is always so busy, that this peaceful summer lull makes quite a welcome change. It was so nice to be able to call her up yesterday and make plans to chill today! That has never happened, and I've known her since we were in grade 5...gosh...has it really been 9 years already? I'm kind of teasing her here, but its usually really hard to get together with her outside of school...its kind of a joke among our friends.

We met at the Solstice Cafe for tea, a cafe that hearkens back to Paris and Vienna's artistic cafe's, that I've only read about in novels. Organic, local, fair-trade, with lots of vegan baking. Paradise, essentially.

Maybe its because Jess and I are around the same age, but when we're together, it still feels like we're little girls, a giggly duo who can literally talk forever. When you grow up with some one, sometimes you can't appreciate how much they have matured, blossomed, until you've been away from them for awhile. I'm not talking about the 'oh-I-can-see-you-as-an-accountant-already' kind of grown-up, nothing bad or dull like that. :)

I kind of had this idyllic notion, that when it was time for people to leave to go to school, no one would really go far, Vancouver at the worst, and we'd all stay as close and our lives as interconnected as before. Most of my good friends I've known since Middle School, and that circle hasn't changed very much, although we have all grown into very different people, our personalities complementing each other in our quirky way, friendships that are as well worn and treasured as a pair of favorite dancing shoes. I try to write like I am blissfully unconscious of my audience (hello? are you out there :P ), and so its 'just the facts'. I know that its 100% non-fiction when I write that I have the most cherished friends imaginable; I am truly blessed. Pardon me as I overflow with nostalgia for the old days, of playing Cops and Robbers in the rain, our kilts swishing, ridiculous nicknames, playing the 'Blue' game on the swings, the Pickle Trees, and gossiping in Windy House...

"Oft, in the stilly night,
Ere slumber's chain has bound me,
Fond Memory brings the light
Of other days around me ..."

(Thomas Moore)

It is kind of exhausting, talking for so long, but I wouldn't trade our catch-up for anything. I haven't been feeling super-dee-duper lately...always feeling like I could have used another decade of sleep, not wanting to move or think too much. Anything but knitting, or practicing my Debussy repertoire (recital on Monday!) seems too overwhelming.

A Treasure Trove

2011-05-11T19:06:00.000-07:00

Well, it was preordained we weren't going to the gardens today. It is raining like it only rains in the Pacific Northwest, as though the slate-gray clouds are settling an argument with the mossy paths, or the sky is doing some house work, sweeping everything clean, washing the floors down on earth. I have always wanted to go to the Museum of Anthropology, at UBC campus.

Artifacts from all over the world are stored there, but my favorites were pieces of native art from our area. The designs are very familiar to me, as I have lived on the culturally rich West Coast all my life. I sometimes like to imagine that many years ago, boats set sail from Japan, seeking that mythical 'something' beyond the horizon, and ended up meeting North American Native peoples of the coast, maybe the Haisla, Haida, Kwakwaka'wakw, or Coast Salish perhaps. Maybe the colors and patterns used are one of those 'universal human ideas', like the bow and arrow, spinning spindles or dresses, or maybe it has something to do with the fact that in order to get to the Americas, people had to walk across the icy bridge from Asia. To my eyes, there is a hint of an idea of ancient Japanese art. Don't you ever play the game, 'this reminds me of that, which reminded me of this'. Its very addictive, and can lead your mind to interesting places.

Vivid mask (click to enlarge)

When I was younger, I used to pour over the National Geographic articles, reading everything I could about explorations in dry, dusty lands, looking for traces of a by-gone civilization of terrible splendor. I wanted to join the archeologist, wearing khakis and toting my paintbrush for moving small gravel, and a magnifying glass, and a whole lot of patience and imagination. I since have decided that I don't think I'd like to disturb the final resting places of kings or civilians, but still would like to help dig a city from layers of silt. I figure that the people obviously believed passionately in their religion, and the manner of their burial was often crucial to their journey into the afterlife or great beyond. This seems a silly thought for someone who spells Atheist with a capital 'A', denoting it like a religion. I can only imagine all the hours it took to collect all these artifacts, and preserve and label them with care.

Southern India, deity sculpture

Anyways, it was fated that it rained today, because otherwise we would not have seen an incredible beautiful place, or had a wonderful encounter with a stranger.

We didn't follow a specific path around the museum, so we saw a smattering of everything. There are hundreds of thousands of artifacts, so we couldn't have seen everything even if we camped out in the grand, glass-roofed hall. Our path was chosen for us by avoiding the large inclines. Tiny placards next to every artifact meant that, of course, not wanting to miss anything, for the first quarter of an hour, I wanted to stop and read each one. Quickly Mum and I both sensed the scale of the building, and begun touring at a more brisk pace. If I had had the energy, I'd have liked to stay there from opening time till closing, but we still had to catch the ferry.

Drums in varying pitches

A Sound Massage

2011-05-10T21:11:00.016-07:00

In regards to my health, things have picked up slightly since my MRV. The ultrasound I had yesterday wasn't too bad. But damn, these tests are specific, which equals very long in the real world. An hour ultrasound of my neck? Didn't realize there was that much stuff to gander at in the small big of cylindrical flesh between my squishy gray matter and heart!? An ultrasound isn't too painful, except for the devices' contact on my skin, and the pressure. The device emits a buzzing, which I can hear in my ear, like the drone of a bee, but lower in pitch, a sound that jabs needles of sound into my bones. The gel is disgusting, and was all the way up to my temples and in my hair. At least its water-based, and comes off in the shower. It wasn't an attractive look though, let me tell you lol. Not a very effective hair gel, at least that's one good thing. The nice technician didn't see anything really obvious on the ultrasound, but it isn't as accurate as the MRV, which will give us the definitive answer soon. Hopefully sooner versus later, because at the same time I would be getting the procedure to unblock my veins, I would get a new PICCline. OH yes, no port again, let me tell you. All that's left to bear witness to that discomfort is a 2 inch incision scar, which is fading into a pink ridge, with the liberal application of pure vitamin E.

I did get the pure pleasure of visiting a vegan, organic bakery, which only opened up a few weeks ago. "Edible Flours" was a delightful experience, and the cupcake divine. Its so nice to be able to pick up something from a bakery, something I wouldn't bake at home, and to not have to worry about the ingredients or ask the poor barista 20 questions about the composition of the confection. Pure bliss.

I am glad all the medical-related things are over. Now I can relax, without the added stress of knowing I have more tests later on. Tomorrow, if its a nice day, we'll go to the Dr. Sun Yet-Sen Gardens, a pristine Japanese garden paradise. I went there on school trip when I was in grade 6, and the memories of the tranquility of the lush greens, rocky pagodas, ponds and raked stone gardens remain with me. Hmm...I think a yummy green vegan gum drop would go nicely with this memory...

Across the Strait of Georgia

2011-05-08T18:31:00.037-07:00

A trip on BC Ferries is always a pleasant one. When I first came to the island, and across the Strait of Georgia, I spent the hour and a half ride with my nose pressed to the glass, taking in every new island's pristine greenery, as we traveled from inlet to inlet. It is an amazing introduction to the Island. Small homes, rocky beaches, and lighthouses dot the otherwise forested islands. The deep green color is there all year round, blending evenly with the smog-free blue sky above, down to the crystalline gray-blue water, waiting at the bottom of the cliff. I've been on this trip many, many times since we moved here, and I am still gripped with a fascination, and an urge to take pictures through the salt-spray coated windows each time.

We were headed to Vancouver, to have an MRI and ultrasound, checking to see if I am a candidate for a procedure called CCSVI, which was developed for MS patients by an Italian doctor, Dr. Zamboni. They are looking for blocked veins in your neck, which could cause a vast varied of problems. Thankfully, I don't have MS, but several Lyme patients have found this therapy very beneficial for them, which makes sense, as Lyme disease and MS mimic each other. It would be nice if this solved a lot of my problems...

I am really exhausted after all the traveling we did today, and am glad the place we are staying at is so nice. It's on the campus of UBC, close enough to the downtown core that it's not a lot of work to pick up a vegan cupcake from Whole Foods.

Boat headed to one of the islands...

It's Mother's day today, and of course we spent a lot of time today on the ferry, which we can pretend was a pleasure cruise ahaha. Every day is mother's day, though, in the real world. Mother's are the best, everyone knows that, and I don't mean to brag or anything, but I have the best mom every :D. I guess one good thing about me being so sick is that we get to spend lots of time together.
(Love you, Mama! <3)

The Screening

2011-05-08T13:32:00.000-07:00

I have been so exhausted over the past two days, that even the most mundane tasks seem overwhelming, except, of course, eating some vegan fruit gummy’s, which cheers me immensely. I thought that a high-powered (3 Tesla's vs. 1.5) MRV (Magnetic resonance venography) couldn't be too bad, but clearly I had underestimated the beastly machine.

En-route to the Clinic

In my youth, I have had many MRI's, always checking that my brain was ‘normal’, not affected by my genetic condition, NF. These have always been mildly traumatic experiences, but holding Mum’s hand helped, and thinking of an open field or the sky, waiting beyond the facility doors. It’s the sheer volume of the machine that used to frighten me, but with an injection of tranquilizers, it was easier for my child-self to sit still for the 30-45 minute test. The MRV was looking for blocked veins in my neck (which would make me a candidate for this CCSVI therapy). The only place in Canada that has the equipment to do this kind of screening is in Vancouver, luckily, at a private clinic. We waited awhile in the high-ceilined, first to be 'refereed' by their physicians to get the MRV done, and then for my turn in the 'coffin'.

If you have never had an MRI or MRV I will try my best to explain how it is, although you wouldn't believe just how loud or uncomfortable it is, especially if you’re head and torso are deep in the machine. The table that you must lie on, if you are having an MRI of the brain/neck, is unbelievable ‘firm’, as though a small piece of uncompromisingly rigid foam is covering a rock hard plate, which is pretty close to how it is. It helps the image show up clearer, and though I’m sure it is important, I would have appreciated a bit more padding ;). The pain I suffer from affects me in various ways and depths (skin, bone, joint, nerve etc). Touching things with my body, or being touched causes wave after wave of excruciating pain to crash over me i, often making me pass out. Even sitting in a chair or lying in bed hurts, but I was turned down as a candidate to live in a space shuttle in zero-g, so what can you do?. I had heard that the test would probably take about 1.5 hours, but this turned out to be 'active testing time' meaning the time the machine was taking pictures. I thought I'd be able to bear lying on the hard table, for the estimated time, although I expected discomfort. The machine is very narrow, and an apparatus rather like a hockey-mask is put over your head, only increasing the sensation that you are trapped in a sarcophagus. I had no idea I was claustrophobic until my first MRI, where I found it difficult to breathe and keep myself from panicking. I am not even sure I was afraid of confined spaces until I found myself in one. Once you are tucked in and ready to go ,inside the machine, you are the requested to lie still, while the pictures are being taken, otherwise the test has to be repeated. Blurry pictures cannot be read well.

How it usually goes is a sequence of pictures is shot, and usually a technician talks to you in between the fifteen minute ‘photo shoots’ to tell you how long the next one will be, and either that you are doing well, or to try and sit still longer. Yes, this is infuriating. Then the machine, which has been humming in the background all this time, awakens, like a monster rearing in it's restricted, echoing plastic cave. A quick tattoo of booms jumps around the cramped space, a precursory warning of what is coming next. I usually jerk with the first BOOM of the actual picture taking, at such a high decibel, that even with the earplugs pressed to your head with pieces of foam, it cannot possible hope to drown out the racket. I think that they hope the earplugs will have a ‘placebo-esque’ affect on your eardrums, because in no possible universe could they seem helpful. The sound is so strong that it is impossible to think any thoughts while it blasts you, sometimes in a steady rhythm, on-off-on-off-on, and at other times a wave of constant sound, varying in pitch. It is exceptionally boring, because all you can do is just lie there, focusing on not moving, which of course makes your nose itch at the most inconvenient time, or a tick to go in your calf or your foot twitch in rebellion. Every thought is blasted from your mind. I wonder if this was an inspiration for the method of ‘questioning’ where the person is subjected to constant, defining music, in part to prevent sleep and wear the person down. It certainly is physiologically and physically draining, being so tense yet still for so long. Ever muscle rigid, crying to move, yet taped into place with sheer willpower. During the few seconds of respite while the machine moves you into place for the next set of photos, you can shift slightly. Wiggle. But the thing that would relieve the pain would be to roll on your side, to stand, any position but this one. As the minutes drag by, panic usually grips me. At some point I feel as if lying here anymore will cause my body to explode, that my sinews will be pulled free of the joints, which would relieve the pain. Just let it be over. Just let it be finished. The injection of contrast dye during the last few sequences makes my stomach flip over, squirming, and a shaking feeling grip my arms, spreading slowly over me. Discomfort is always my reaction with the dye, in part because it brings some part of me back to a terribly painful and frightening test I had as a toddler, again with an injection of dye, which I can remember vividly. At least I can tell the end is in sight, and the dye will be out of my bloodstream soon.

I’ve found spending time wishing something will end only makes it last longer. Just let it end… and 2.5 hours later it was finished. The pain is so great that I can barely sit up, just flipping onto my side would be enough, as the IV is slid from the crook of my elbow. Every inch buzzing, screaming, the relief enough to make tears leak from my eyes again. I know if you have not had a test this long, or aren’t in pain to begin with, that it would be difficult to understand the agony. I only hope that if you have to have this test done, the place where you go has earphones in the machine :), and that you really really think the procedure will help.

Then a burrito. Car. Bed.

Visiting x 3

2011-05-04T19:12:00.004-07:00

Again, I got to visit the lovely Mrs. Crossley's classroom and help out her kids. I had so much fun. Much ado about nothing is one of my favorite Shakepeare plays, and it was interesting reading a grade 8 students perspective on the play, and its motives. The guiding question (an International Baccalaureate Program (IB) staple, which is a question without an answer, essentially, just there to 'guide' your thinking) was "What is the difference between 'being' and 'seeming'?." As most of the complex characters of Much Ado put on both figurative and literal mask throughout the play, it is a good question to get kids thinking about motives, insecurities, and consequences of the characters (and by extension, their own) actions. I almost miss guiding questions. They challenged me to think beyond what was already written on the paper, and to form my own opinions about a work. I guess I can accept this as helpful now, but when you are in IB at school, you can definitely not appreciate the benefits of the program. I never considered myself a good proofreader, but I suppose after writing and editing my own essays for so long, it is much easier to approach another students' essay.

It was a very 'Shakespearean' day all-round today. Two of my good friends, both named Laura (S. & G., respectively), and I hung out today. We baked cupcakes at Laura S's house, which was so much fun. Vanilla vegan cupcakes with hand-beaten icing (didn't work out so well), but the cupcakes were a nice golden-brown-caramel deliciousness. It was nice to just chillax and laugh with the girls, but I was pretty tired after such a long, yet enjoyable, morning.

In the evening (ok, looking at my day on paper, it is easier to see why I am so tired), my good friend Stray came over, and we knit together and gabbed. She is a very awesome person, and enjoys a wide variety of arts and crafts, particularly fibre/fabric related ones, like me. I've known her since grade 5, perhaps even earlier, because I came to GNS for a few 'trial days' in grade 4. She is a very easy going person, full of the most amusing stories and strong opinions. My sides kind of hurt from laughing all day, actually. Hopefully tomorrow will be more restful...looking for a break!

I Voted! Did you?

2011-05-03T18:41:00.002-07:00

Yeeaaah. Just Voted.

Congratulation Elizabeth May for getting a seat in Ottawa; a historic victory for the Green Party (a first for North America!). I live in Saanich, but was just outside of her riding, although I was definitely rooting for her loudly. It is so exciting. Better luck next time for Shaunna Salsman, our Esquimault-Juan de Fuca GP candidate. What really drives me crazy is that only 61% of people, nationwide voted (that's 14,720,580 of 23,971,740 registered voters). Wow. No wonder there is, yet again, another Conservative Majority Government in Ottawa. Alas. The way a vote counts in Canada is very confusing, and does not mean that a vote nation wide counts towards a seat in government. Hopefully this system will change in the near future, so the Green Parties percentage of votes will reflect the true number of seats voted in: 13. Hopefully next time, even more people of my age group, and rock the vote. It's about time things were shaken up cross-country, and I feel we're the ones to give it a go.

Today I had so much fun in my grade 6 teachers classroom, Mrs. Crossley. I dropped in on her grade 8 English class, and helped edit some of their essays on Much ado About Nothing. I remember doing this same project all those years ago, and I probably still have my green and pink mask about the character Beatrice somewhere. I had a great time helping the kids. Mrs. Crossley really taught me how to write a good essay, and I still follow the diagrams that she teaches from today. The format of an essay is so ingrained in my mind now that I do it automatically when I write anything. I signpost in my sleep, and my brain churns out a thesis statement on auto-pilot, as soon as I read the question or see the topic. I get to go back tomorrow, and I can't wait :D.

Surprise

2011-04-27T19:13:00.009-07:00

The 'surprise' party is always the best kind, and its so much fun for the planners. It was one of my best friends'- Lisa- birthday. I invited her out for a Mexican lunch, and then got a group of our friends together. She was very surprised; a job well done.

There aren't many Mexican restaurants in Victoria, maybe only a handful. None of them are super fantastic, and many serve 'western' food too, which I always think it weird. Maybe I just got spoiled growing up in California, where a brilliant burrito is like a Starbucks; always across the street.

I hadn't seen a few of my friends for a really long time. What with school and music and work, its been a crazy last few months, but now that exams are over for most of my friends, we can relax again.

In other news, I finished knitting another cupcake today. I gave Lisa one for her birthday, and was inspired to bake/make more...more...lots more :). They are so adorable, and I was thinking of selling them on Etsy. They'd be a cute Birthday gift for someone, somewhere, and people are willing to pay a fortune for anything handmade. There are so many different kinds of toppings and icing combination. Just experimenting with sequins now :).

Just A Trim

2011-04-11T20:06:00.004-07:00

Getting my hair cut, and putting on red lipstick is the sure thing to make me feel a little better. Looking well can almost fool me into thinking I am not sick, or not as sick. I have been so exhausted lately, which is why I haven't been writing as often. Sometimes its disappointing to look at the topics I have to write about about whats been going on in my life and realize that there is only so much talk of 'sleeping' and audience can handle, until they follow suite.
I changed my blog profile picture to reflect the new do :P, but thought a picture of the severed hair was even cooler! This is my second donation of hair...but I haven't had hair this short since I was a little girl! Its super light, and not (as) tangled! OH boy! It takes 10 donations of 10 inches + of hair in order to make one wig for a kid, which is a lot. There are number of serious cool organizations who give wigs away (usually they are quite expensive...$800-1000...lot of work involved) to children who can't afford them. Angel Hair (in Canada) and Locks of Love (USA) are two organizations I know of...so if you have long hair and are thinking of chopping it off, please keep these organizations in mind!!

Over a foot...braided!

Although I registered online to vote months ago (a few days after my 18th birthday actually), we physically had to go into the voters office to put me on some voting list. Now, in less than a month when we all show up at the polls, I can just check the right box and leave. Simple. And very exciting...my first election. I don't really believe the democratic process is that effective, nor the best system of government possible (of course...I don't really have another suggestion except changing people to be basically good and honest, which as far as I'm aware isn't a form of government?...). The office was in what used to be a primary school, and wasn't very easy to get into. Now all that's really left for me to do is research candidates. I feel obligated to check out every one's little party blurb, even though I know I would never cast my ballot with their box checked. I do get the feeling that candidates really do say they will 'change the world' just before an elected. But maybe I am jaded, having lived in the USA and seen election scandals, and watched every recently elected president campaign for re-election beginning in the first few months of office. I have a feeling that if they could spend lots of money on elections, and if they were on a set date in Canada, the candidates would do the same things as our Southern neighbors. Its a homo sapien thing, not a country-specific behavior.

2011-03-20T18:41:00.021-07:00

Help Fill a Dream is a Vancouver Island organization that fills the dreams of children with life-threatening conditions, and also provides financial assistance to families with sick children. They have granted over 1,900 wishes to Island kids!! They are a fantastic group of hardworking, big-hearted people, who have helped me and my family enormously over the past few years. They are certainly a can-do organization. Recently, they had their big 'Rink of Dreams' fundraiser, which is a 24 hour hockey marathon! A really nice girl about my age named Rachael and I were asked to be honorary captains, to drop ceremonial puck together- how cool is that? There was a rehearsal a while ago, where I got to meet everyone, and see how things were going to go and all, and yesterday was the big finale of the fundraiser. Amazingly, a company called MacQuarie Group matched the donations, and HFAD was presented with a check for $80,000 (with hopefully another $20,000 en route, bringing the final total to $100,000!). I have no doubt this will quickly be turned into a whole lot of wishes.

Check presentation ceremony :D.

I had no idea wheelchairs could go on the ice, but apparently it is no problem. Before I was sick, I was a pretty poor ice skater, but could manage by holding on to two people and constantly falling or nearly doing the splits. Lets leave it by saying that I lacked control, and had to run into things to stop. I've never played real Canadian 'ice' hockey, but loved field hockey at my old school, and what I lacked in skill I made up for in enthusiasm.

The whole thing was just a whole lot of fun, and exciting. I didn't stay very long, because I was feeling so poorly, but enjoyed watching all the costumed characters unfolding the ginormous flag for the singing of 'O Canada'. I think the people were in costumes partly because the most popular wish request is a trip to Disney Land :D. Very cute.

Darth Vader, alongside Princess Leia, Snow White and Captain Jack Sparrow.

The Gatekeepers Den

2011-03-15T19:54:00.050-07:00

My second appointment with Dr. Ghesquiere went just as oddly as the previous one. This time, I was in to talk about my blood infection (enterobater cloacae), which I was assured would be handled promptly and effectively. Of course this wasn't much of a comfort, after I had been dismissed as 'not having Lyme disease' in a brief encounter with both partners of the Infectious Disease medical practice, the only one on the Island. It was deemed prudent to have my blood cultures retested, to make sure I was bacteria-free, so I could stop taking the Bactrim DS.

Dr. G reviewed my bloodwork, and was confused by my severe anemia and off counts. The obvious answer, that the tick-borne bacterium in my body was feeding off these cells was a little too obvious. Captain Confusion and Disinformation is hard at work.

I am shocked that doctors find it so useful to repeat very definitive tests over and over again, looking for things that are only explain a few of my symptoms (at best). My blood work, testing for Lupus, rheumatoid factor, vasculitus, connective tissue disorders, protein production (rule out cancer, bone marrow disorder, over production of proteins in immune system), which all came back negative, yet again. I am not sure whether this is the second to fourth time I have had these tests done. These are the popular string that doctors usually cling to when they see me. Its the old 'oh-anything-but-Lyme' strategy. If you test a patient for enough things, you could find something wrong (which is what they hope)...something to explain all of my straaaannngeee symptoms.

Perhaps it is just a perception, but the doctor seemed to be working very slowly. We only have about half an hour, so bothering to slowly explain all the things I don't have, or asking the same questions again does not make sense to me. I get the impression he is stalling, trying to get through as little as possible with us in the short time we have, or perhaps I only think this because I know it to be true. I am detecting a pattern with this sort of doctor.

Dr. G's wording throws us all, latching on to an expression and holding on for dear life. In our last appointment, the catch phrase du jour was, 'I am obliged to tell you...'. Today, I am asked, directly, because I am now an adult, whether I would be willing to see an adult rheumatologist at the Arthritis Soceity (even though my rheumatoid factor is negative) and a physiatrist. He said if he was sitting in my shoes, these would be the places he would want to be, the doctors he would want to see. How infuriating, that the doctor I could use most of all is sitting in front of my, and smiling benignly and lying that any other doctor would, essentially, help. Except not his kind of medicine. I am feeling too sick to digest this odd appointment, so I shall put off more reflection until I can think without my brain throbbing

City Lights and Harbour Sunset

2011-03-12T19:58:00.005-08:00

I have been healing nicely all week. Already the incision wound doesn't hurt as much. It mostly pains me when I try to move my shoulder, pulling at the stitches, which gives me an odd pinching sensation. Its hard still to roll over in bed, or to pull myself up from the chair, but I know I will be back to my old self before long. I didn't leave the house all week, but instead caught up on two seasons of Halifax Comedy Fest (best show ever, if you haven't watched it! Atlantic comedy is where its at!) and the Winnipeg comedy Fest. Laughing hurts sometimes, as my ribs are very painful and tight, but it feels better. A nice ab workout, that how I like to think of it. Yesterday, I made a pilgrimage to the library, but it was a very brief one, as I could barely reach things off the shelves, which was very annoying. Its like being in a museum of soft toys and not being able to touch them! Alas.

The light today was of a pure, clear kind, with dark blue clouds against a pure baby blue sky. It is magically at sunset, at the Inner Harbour. I can see why it is such a popular tourist stop! It is perfectly situated to catch the final rays of the sun and it sinks below a treeline dotted with condos. If you squint your eyes, so the buildings all blur together, you can almost imagine what the virgin landscape looked like, before man's machines shaped and twisted the land. I believe I read somewhere that the native Songhees called the area something like 'cradle harbour', and would put a baby's cradle in the waters as a blessing of long life or wellness. I forget the details, but if any place I have seen had a more fitting name, I cannot recollect one.

The path is very nicely paved, and relatively flat. The odd thing about that area is the sheer amount of condos surrounding you, towers of glass and steel stretching up up up to the blue ceiling. And yet, there are never any people around. The streets nearly deserted, the only sounds from boats and planes touching down on the water nearby. Its like a background hum, which you can hear over the water lapping on the shore.

It is very relaxing being by the sea. I feel certain that there really is something to that old adage about going to the ocean for your health. The minerals in the air the are beaten off the rocks, the soothing sounds of water moving, the relaxing blue-grays. Peaceful. It was very cold, but just what I needed. Really cheered me up. I haven't been feeling well these past few days.

Outta There!

2011-03-08T18:13:00.037-08:00

After nearly 2 month of a improperly treated blood infection, my port-o-catheter finally had to come out. It is nearly impossible to treat the infection if it gets inside the port because there is no blood flow in the device itself.

We were instructed to go to the ER at 8 a.m. and tell them that we were here to have the port removed by such-and-such a surgeon. At least I didn't have to check in the night before, which is usually standard. Being in the hospital for a few hours was enough for me to see that I could have never slept, what with all the beeping and bright lights and windows and people always moving. Apparently, if you go through the normal referral way of doing things, it would take forever to get into surgery, but this way it only took all day. We waited for awhile in the ER waiting area, and very shortly met with the surgeon, who said the port needed to come out, and someone would take it out today. I am so used to being brushed off at medical appointments that I was surprised that the doctor was really nice and gentle.

You can't eat or drink (arrrrg!) if you are going in for surgery, so they started an IV line in my arm to give me a little sugar water. I just tried to stay as still as possible and not think how exhausted I was with little or no sleep, and how uncomfortable the IV was, and how generally malaise I felt. Thankfully I had several hours worth of audio book on my iPod, so I could just close my eyes and follow the story. I was taken 'upstairs' to the surgery daycare, where I could lie down and rest until they came for me (duhnn dun dunnn). The nurses were all so kind and understanding, and didn't come to poke and prod me.

I obviously didn't want to know all the nauseating details of what was going to happen to me once I got unconscious, but I really wanted to keep the port. We paid for it (literally) and it was inside my chest for over a year...we weren't good friends, but we had an understanding. For safety reasons, you can't keep the devices, but the really nice resident anesthesiologist, Dr. August, took a picture for me! It looks a little disgusting, but the pulled it from my chest, after all! He said he'd clean it up for me, so its not too icky to look at. Its strange to think all that cold fit under my skin.

Nice to finally know what the damn thing looks like!

Once I got to go rest in the recovery room, I was allowed to eat. I had heard such terrible things about the food at the hospital that I was worried about what kind of vegan food might show up, but the hummus, pita and carrots 'n celery were just delicious. There was soy milk too! I was really really hungry by late afternoon, but my mum and Nancy thought it was pretty decent too!

Yes, the food came from a hospital cafeteria.

Its funny, but the incision hardly hurts at all...in fact, it is practically cozy compared to the pain in the rest of my body though. It just feels like my skin is stretched and that someone had their hands in there. It pinches when I tense those muscles, but I am avoiding doing so quite nicely. The next big job is to clear up the infection, which would be nice, so I could get another IV line of some sort (probably a PICCline) put in my arm. Gotta get back on the wagon lol.

Post-Wake-up look...(that's iodine, not blood)

Seattle

2011-02-14T23:35:00.002-08:00

Traveling bogs me down like nothing else. I can't think when there are so many sensory messages surrounding me...all of these new things, the sounds of everyone moving somewhere quickly, the texture of the sound of peoples clothes rubbing up against each other, the nauseating smell of meat and perfume everywhere, the way the cadence of someones voice fills your head and you cannot think, the repetitive shock waves of people shaking the floor around me, the constant adrenaline pumping through my veins courtesy of my hearts' 110 bpm.

We took the Clipper today over to Seattle, to see my doctor there. This has a feeling of routine...I forget normal people go to doctors in their hometowns haa. I don't like staying in hotels, because I always feel like they are very dirty and I start imagining how many people have stayed there and feel sick already. It will be worse on the plane, in a few days, when you get coughed on my every single person on the aircraft, compliments of the recycled air. I can't imagine being an astronaut...drinking recycled water and breathing recycled air all the time...wow. I guess you only choose that profession if its something you can get over. But at least there would be less germs in space. Whoa I must be really tired...my mind is wandering all over the place haa.

Unfortunately, its going to be super busy over the next few days. Tomorrow (euh) I'm supposed to see the doctor, who isn't too far away from here, thank goodness, and in two days time we are flying to San Francisco to see (I feel I'm becoming predictable) another doctor. Not something I'm looking forward to very much, but it might be nice to see some of my old friends if things don't get too crazy. I still am exhausted from that infection. Even small steps are so tiring that I want to stay in bed all day. No such luxury at the moment tho. I think as soon as I can, I am going to sleep a full 24 hours to catchup.

“What Now?''

2011-01-31T20:12:00.005-08:00

I seem to be one of those patients who doctors give the "What now?" face to a lot. I feel like a burden to their ordered lives, with so many complaints and problems that they take up much more than the few lines given to express the "reason for coming in". My prescriptions list flows into the margins.

I have been feeling extra specially awful for nearly a fortnight. I had about 6 of the uber cold shaking episodes, which are incredibly painful and exhausting. Shaking is our bodies natural way of warming ourselves up, and is impossible to fight, just like you can't hold your breath and suffocate yourself. My Lyme-aware doctor thinks that it could be a reaction from a glucose intolerance, which apparently affects many women with Lyme disease. It is not cool. A few days ago I took a 2 hour glucose test, which involves drinking a deathly sweet drink of 75 grams of glucose (ooh yes. I don't know if I have ever drunk that much sugar in one day ever). Then, you sit still for 2 hours and don't eat or drink (minimally...can't go two hour without a drink...so dehydrated always!) and then they draw another phial of blood. There was a lot of blood drawn that day...3 needles in all. I had to have a blood culture done, which included 4 culture bottles (whoa!) taken from both of my arms. I was not down with the idea at all but it was important. Apparently, I have some kind of gram-negative bacteria in my blood. The walk-in doctor I went to see was of the opinion that that was that, and the reason for my chills and tiredness, and that 2 weeks of double-strength Bactrim would magically cure my symptoms, or at the very least clear up the blood infection. The results were a bit confusing...the lab made a mistake on the preliminary report, but the wording is odd. It sounds as though they are not convinced what is ailing me.

I can't find a family doctor...none will accept me, or my mother for that matter. It is like stepping into a fantasy land; It's the McCarthy period and we are blacklisted for suspected Lyme-ist ties; Big Brother is watching out for me though, thank goodness. I don't know how they can even legally turn me down. But instead, I have to wait over an hour and a half in a walk-in doctors seating area for my 10 minutes with the white coated doctors who wear the stethoscope like a tie. I hope that when I become a doctor that I will start by listening to the patients, I mean really listening, and diagnose the whole problem. Now, if you go to your family doctor, only one issue can be addressed at a time, which is an absurd system, because many disease have multiple, complicated symptoms, and how could a doctor possibly fully comprehend which specialist to send you to if he only discusses one of your complaints, briefly? It is absurd!

It is disgusting how the medical establishment is repeatedly failing me in all areas. How could a previously healthy 15-year-old female slip through the cracks without even a backwards glace from the attending physician? Even when that patient was patiently fighting for her life, I still had to fight for their time and ear. I only wish I could get appointments with all the physicians who tried to pass me off to another useless doctor, and explain to them the truth, to shake them with its devastating power. To kindly describe to them in a condescending tone that I have learned by example so well, that there is an epidemic going on, which for some reason hasn't passed through their gated walls and foot thick glass of the ivory tower where they reside, somewhere high up in the clouds, where the goings on of a creature as small as a tick are insignificant. And anyways, very few ticks apply for passports, so they can't be coming into the country!?

To surgically open their eyes seems the next logical step.

Literary Soup

2011-01-30T22:19:00.023-08:00

I take English Lit 12 through SIDES, our local distance education school. It is a very exciting course...I had been looking forward to taking Lit 12 at GNS with one of my favorite teachers since grade 9. He read for us passages from Chaucers' "Canterbury Tales" in the traditional old English, and "Beowulf" in the Anglo-Saxon tongue. I was inspired and enthralled that something someone hundreds of years ago had spoken and written had survived, and that I could still connect to the characters, and laugh at the follies of the pilgrimages and their fascinating glimpse of 14th century life, and cry on the beach as Beowulf lay, dying, but triumphant against his last fire-breathing foe. I had been hooked on reading ever since I got past the first big hurdle of actually learning to read. I was against the idea, determined to never read, but instead work at a gas station or McDonalds. Times have changed.

I am currently working my way through the "Canterbury Tales", which I spent the greater part of today working on. I have a wonderful audio-book version of the poem, which saves me the headache of wading through the soup of old-English's abundance of odd vowels and consonants, whose sound has evolved over the years.
To complete a 'literary-ily' perfect day, I scored big points with the rare word qiviut, coming to us from the Inuktitut word ᕿᕕᐅᖅ. I feel like such a fibre nerd. I am slowly picking up drops of energy, but am trying to rest up for whatever excitements of life await me this week!

Qiviut: the wool of the musk-ox

Friends of the Library

2011-01-16T17:59:00.017-08:00

I think I will be reading from today til the end of the world in 2012.

We went to the "Friend of the Library Book Sale" today, the first time I have been well enough to leave the house for a few days. We arrived to sort through the remaining books of the sale, during the last 30 minutes. Basically, you pay $5.00 for as many books as you can carry, and we managed 21 books. That's an average of something like $.24 a book. Crazy, right? We got some wonderful old books, including a book of Spanish American poetry from the 30's (bilingual), a book on war tactics, botany of the Pacific Northwest, history of print making through the middle ages, "Strange Fruit" (the history of the Billie Holiday song), 2666 by Robert Bolaño and many others. It is an excellent start to my own library...and these already have authentic bar codes and decimal numbers!

The Lyme-Flu

2011-01-14T20:20:00.000-08:00

Sweating is absolutely disgusting. I feel so utterly drained, dehydrated and sticky. Ever fiber of me that is still connected with my drugged brain feels taut, tense and oddly like they have been roughly rubbed and stretched the wrong way, and the sinews broken and hastily knotted back together. I have spent the day alternatively sweating and cooling. The infuriating thing is I actually have an 'under' temperature of 98 F (36.6 C), which is actually higher than it usually is, but still .8 F below normal. I did have the other kind of fever earlier on in the day, but it seems to be all over now.

I started my afternoon feeling horrible. The terrible Lyme-related suffering creeps up on me very slowly, so that between the minutes I can feel myself slowly sliding into the anguish, before it engulfs me like boiling water. My body began to shake violently, and it was like I had been plunged into bitterly glacial water. After the shaking wound to a halt, I just rested for the day. My clothes are damp with sweat and I feel like I have been shaken upside down for awhile, the blood pounding in my temples. The feeling is like when I see blood, the feeling of going into shock, or the sensation of distance after you have lost a lot of blood. I need to rest now.

Resolved

2011-01-01T21:37:00.042-08:00

For sanity's sake, I cannot consider the changing year of our Gregorian calendar of much importance. If I pause to contemplate where two-and-a-half years of my life have disappeared to, I would mentally skid to a very abrupt, and painful halt. I'd rather make a big deal of New Years when I can have my champagne (not Pellegrino) and drink it too.

The sun sets on the ferry's in the downtown inner harbor (Parliament Building to far Left)

All in all, the first day of the second decade of the second millennium went exceptionally well. People say that the way you spend the first days of the new year reflect on how the new year will be. That is absolutely ridiculous...every day should be lived as though it is the day, wonderful and fresh and free of mistakes in the morning, yet today's actions will be tomorrows memories and consequences.

One of my goods friends from GNS, Roy, is staying with us, which is really nice. It is strange to think of all my friends living so far away, but wonderful to have them closer, even if its only for a few weeks. It was a beautiful day, where the clouds are streaked across the sky, the sun peaking between the slits in the sky. Pristine, and refreshingly cold. I was bundled up in true Canadian spirit.

War memorial at dusk

It was nice to just be downtown. I used to explore all over our wonderful capital frequently; admiring the views, meeting friends, checking out places, and just breathing in the crisp air. The city core has a wonderful feel. If you head away from the water, the amount of tourists who wander there become less and less, and you can discover the 'real' city. A major part of our industry is tourism, so there is a nice, marked up district, where there is an abundance of maple-leaf emblazoned items for sale, maple syrup, and mini native totem poles.

We ended up for a snack a small place in China town (fondly known as 'China Block', and a much more accurate name). Good food!
Another day in beautiful BC.

Festive trees in Bastion Square

Piano Recital

2010-12-16T21:56:00.064-08:00

I am so proud of my piano students!! I have always been so lucky...having students who not only love the piano and music, but as a side-affect of that love, practice! Playing because you want to and need too, versus because you should or your teachers insists that you do, means that you play the pieces with such lightness and happiness. There is nothing more soul-crushing than being tied to a piano for your strict practice time. I have seen it turn talented, but pushed friends over-board, to the point they don't want to play and quit. This always makes me so sad and has also made me vow that I will never ever do that to a student of mine!

I know that I have the most wonderful, caring, energetic and dedicated piano teacher, Kristin, who is always there with a thoughtful suggestion and feedback. Kristin had her Holiday piano recital tonight, which is always so much fun and puts me in a cheery mood. I really need it too. I have been feeling so awful...my ribs are constricting my lungs in a white-hot embrace that makes me wish I had no need to breathe. But the music always puts those thoughts on the back-burner. All the pain becomes white noise once my hands hit the black-and-white bed.

I decided to play the classic "I'll be home for Christmas". I have a huge holiday music bible which is simple enough to allow me to expand on the melodies. This in the fixed-up Metchosin Community House, a beautiful, expansive room where we used to always have our piano parties. It is fully accessible too, so nice and easy for me to move around.

Kristin generously invited my students along to play, if they so desired. I am teaching Lisa, my EA (educational assistant) from SIDES and her daughter, Emma. It was their first recital, so I could tell there were a bit of butterflies floating around them, but Lisa decided to play a beautiful rendition of "Greensleeves".

I was just so proud of Lisa for playing! There is another adult student of Kristin's, which must have been nice. Usually its just a bunch of kids (the littlest ones are so sweet! I am impressed that their fingers can move with such dexterity!) I hope it encourages some of the older students to take on students as well, because it is the most rewarding job I have ever undertaken. I actually am shocked that I get paid to have so much fun, but I would like eventually to put myself though med school, so I have to save somehow.

After everyone has played their pieces, we all get to chow down on some of Kristins' famous fruit 'flan', more a delicious spongy/flat cake with season fruit a top it. It is all-round a wonderful evening! Can't wait for Christmas...just a few days. "Will it snow?"- that's always the big question here. I'm dreaming of a white Christmas...just like the ones I used to know...hmmmm mhhmmhmm...

Mad Hatter

2010-12-16T17:44:00.043-08:00

Yes! I have just completed my first hat. It wasn't any where near as hard as gloves, but the challenge this time was running out of wool at the top (whoops...miss judged that one). Luckily, blue is a pretty common color in my yarn scraps bin, so i found a suitable substitute. A perfect miss-matched end, which I actually quite like. Its funny how accidents sometimes work out just so well. I just have to tuck in the ends now, my least favorite job.

Improved tippy-top

A perfect fit

I based my hat off of my favorite number *geek alert*, which is Phi (.618), part of a mathematical proportion that occurs alarmingly often in nature (snail shells, human dimensions, leaf vein patterns). Each row of my hat is .618 times smaller than the last. I ran out of room at the top, and just started the pattern again (sort of...running out of wool really put a damper on that). Ah...I feel so wonderfully geeky. The hat turned out great, though, which I'm super pleased about - practical is nice once in awhile.

It must be my mad skills at ironing the lines of pain from my face, which make me look so 'normal'. The problem with Lyme is the lack of physical symptoms. The grotesque and absurd symptoms begin where you cannot see-just below the skin, or a fine layer of makeup. Whenever you'd look into my face or speak with me; you would not believe the pain in my body right now.

Everything in my body aches.
My ribs have been smashed with hammers, the muscles were plucked like a guitar sting. There is a sensation in my bones similar to the hum of an angry Africanized killer bee hive, and gradually swelling squalls of bloodthrobbingagony make the bees hunker down into my joints, defensive or protective or invasive.