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dreamland, first, hope, lessons learned, new perspectives., New years, pills, poem | 3 Comments

2013 Rhapsody, in A Major

A year of sailing seven seas, internal.
Year of the spirochete, infernal.
Mortal heart of a child, eternal.

Girl + Infection = Outcome Unexpected

Girl + Infection = more pills than Lego pieces, per capita

Rectangles, round, ovals, gel caps,
    pasties, sublinguals, compounded, and tablets.
    (to navigate the bottles, you’ll require maps!)

Yet…

I’ve swallowed more handfuls of pills
    than fears.
I’ve dripped more drops of medications,
    than tears.
I’ve flown beyond this body,
    but always come back.

If life = chronic infection:
    hold close the light: it’s more illuminating than blackness
embrace love: let it heal and guide you
    follow you heart, to your path
lead with hope, and courage will follow
    find this moment, and you’ll receive the present
trust in happiness: it never left
    welcome life, your old friend
live in your life: you’ll discover it’s waiting

open your arms, and embrace your future
open your mind, and wisdom and perseverance will arrive
open your heart, and love will fill it.

The beginning of the journey never promised
    a fairy-tale ending,
But
    the truth? At the end of five years?

Girl > Infection.

A note: This poem came to me this morning while watching the clock change from December 31, 2012, 11:59 PM to January 1, 2013, 12:00.

bloodtest, CAT scan, drugs, ER, hospital, injections, pain, pancreatitis, ultrasound | 1 Comment

Pancreatitis

It feels so good to be home! We took a little ‘trip’ to a rather fancy new place in town, and boy does it feel good to be back in my own bed. Where it is quiet. And I can be alone and rest. 😛

I wonder if there is a ‘RateMyHospital.com’, because the new wards at RJH in Victoria are super super nice. The care would have been top quality if I wasn’t one of those Lyme Lepers. Rats! Sometimes it sucks to be the crazy patient who is mysteriously ill. Oh wait, just kidding, it sucks ALL the time, but especially when you are trapped in a hospital and have to do everything they say.

Something has been not quite right in my belly for awhile. I’ve had the strangest feeling of wild hunger followed by periods where I feel ‘full’ and don’t want anything and couldn’t even look at a bowl of my favorite orange soup (not made from oranges guys, but orange veggies! Jeez!!). The pain started a little way into last week. It was an urgent and rough pain, a squeezing-compressing-swollen-pushing-pressing-tender pain, the kind that makes you feel as through you’d be fine parting with your internal organs just so long as that would make it go away. I usually can breathe and meditate myself out of any kind of pain, but this was beyond me, which I feel is saying something. I had zero tolerance for the pain, and basically laid around all day, complaining (which despite how long I’ve been sick for and the severity of illness, I actually don’t do that much of. this is confirmed by my family :P). The pain built. I had Mum phone doctors, which usually isn’t something that we do, unless we can’t figure out why or how to stop it. I’m on some strong oral meds, which we figured was just causing stomach pain. I kept saying it was my stomach hurting, partly because all those squishy bits in my tummy are all so close together, and usually it is my stomach that is the culprit.

The next day I knew something was seriously wrong, and wanted very much to go to the hospital. I wouldn’t have minded if they’d taken me by ambulance, which usually isn’t an idea I’m down with, even in life threatening conditions. I wasn’t quite ready to voice this idea out loud. It hurt so much to sit up or move, so I laid still, trying to find a position that was more comfy. I should have been a little suspicious of the fact that all positions hurt, and nothing made the pain any better. And that it kept getting worse. I didn’t eat all that day. I just couldn’t bear the thought of eating. No pills either. By early the next morning, the pain reached such a pitch that I was desperate to get to the ER. We left very early in the morning, which for me is unheard of, even for the most important things. I hadn’t slept all night or day. The pain was all I could focus on. I felt like I was going crazy with it nagging at my insides.

Thank goodness hardly anyone else was crazy enough to get going to the hospital while it was still dark outside, because we got in and were seen by a physician very quickly. Blood work confirmed acute pancreatitis, or the inflammation of the pancreas. My amylase and lipase (enzymes secreted by the pancreas) levels were extremely high. By this time I was utterly ruled by my pain, an animal in distress, and the only thing I had the patience to pay attention to was “when were they going to bring in the painkillers”? They did. A sub-q injection of the same drug and at the same dosage as I was getting orally. I was already over-medicated by their standards, so goodness, we wouldn’t want her getting to comfortable, right? Sigh.

The treatment for pancreatitis is basic. No food or drink by mouth. Period. For a couple of days. And see if things calm down. Darn. I had to stay at the hospital until I was well again, which of course meant no sleep on top of no calories. Bad combo. I had a room to myself in the ER with doors on it, which was amazing and rare. We we waiting for a bed in a ward to open up where I could stay, but in the meantime I could get a whole bunch of audio-book listening done, and relax. No knitting, so you know I was pretty sick and uncomfy.

I am already a little bit manic about my water. If my bottle gets empty, or it is out of reach, I go a little bit crazy and am very demanding when it comes to water. I feel crazed when I can’t have water, like it’s my drug of choice and I just can’t get enough of a fix. I was getting hysterical about not having any water. Which makes me even more unusal than they already thought…lucky me.

After a night in ER, I spent 2 days in the hospital, sitting very still, being poked and scanned ever now and again. Luckily, I wasn’t allowed to eat or drink anything the first few days, so I didn’t have to taste RJH’s legendarily disgusting food. Yay! Although when I was allowed to eat, it was just white rice and sad faded green beans for me. Seriously…what hope is there for a medical system which feeds crappy processed foods to people who come to them to get well? But I digress…

I was too sick to knit. This has never happened! Moving even a little bit hurt my pancreas, and sent a wave of pain through my whole core. I get pretty exhausted and have trouble moving if my blood sugar drops, which it does if I don’t eat every few hours. So the nurses were all surprised with my extremely low blood sugar levels. I probably seemed even crazier when I refused the ‘sugar water’ IV’s, because that kind of sugar just makes me feel even worse and more lethargic. The ‘pasties’ of glucose to boost you sugar taste really awful; powdery sweetness, but not in a good way like sweet-tarts, although they are colored, and just as ‘cold’ on the tongue as those candies. I did talk them into just giving me a spoonful of honey when my blood-pressure dropped subsequently which was much more enjoyable :). I’m exhausted from the whole ordeal and am resting and eating (sparingly) a pancreas-friendly diet of carbs. Yum. Apparently veggies are kind of hard to eat at this point, which is breaking my little vegan heart. But don’t worry leafy greens, I’ll be back soon! ~

ER, MRI, pain, PICC line | 5 Comments

A True Holiday Miracle

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?

changes, lessons learned, linden, spinning | 2 Comments

Oodles of fun

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.

bakery, birthday, cupcakes | 0 comment

Pre-Birthday Dinner

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.

grandma, yoga | 1 Comment

Yoga with G :)

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!
amy, arm bands, family, travel | 0 comment

Mr. Max Comes to Town

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
amy, arm bands, birthday, cupcakes, sick | 1 Comment

Travellers by Train

mint and vanilla
Cuz eating a vegan/gf cupcake with a smile 😛

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? 😛


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

arm band, colors, seasons, sun, tea | 0 comment

Colorful World

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?!

arm bands, cupcakes, PICC line, yarn | 0 comment

First Sale!!

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.

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