Rush to Last Days of Summer

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

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

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

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!

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

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

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!

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 🙂



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 ;)

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

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!

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