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Archive of ‘Uncategorized’ category

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Oh hi New Year. We meet again.

(No, please, don’t look at when my last post was. Ah…no I just can’t bear it. )

Oh surprise! A year wow, and I’ve barely had anything to say, which seems so unlike me. I’m going to be honest…I just haven’t been feeling so cherry/chipper this year. Because stuff’s been happening in my body that hasn’t been easy to fix, that has been beyond my control, and that sort of shit pisses me off. I know when I’m on an oral and IV antibiotics, and a bunch of sleeping/pain/nausea pills everyday that it’s basically some mad-chemists soup in my blood stream, and I could spontaneously combust if I stand too close to an open flame, or drink alcohol. That’s been my life from the end of 2008-2012. Let’s call this the ‘Medication’s Supreme Reign’, or the ‘Epoch of Anti-Biotics’, or something rather medieval-sounding like that.

If that was then, 2013 onwards has been the year of things going majorly wrong on what had previously been a very small dose of antibiotics (we’re talking fractional doses, every few days…), and for clarity I shall also name this another epic sounding name, such as the ‘Time of the Morphing Symptoms’, or perhaps, even better, ‘the Years of the Abdomen of Doom’. Basically, this year has revolved around me taking every-decreasing amounts of antibiotics, feeling absolutely awful on small doses, taking even more supplements to counter-balance the bad affects, and through everything, me feeling worse, and then better, and then worse again. This is good, in comparison to my usual trend of going off antibiotics, and getting worse day by day.

Despite so many setbacks, I’ve been getting better. In small ways. In subtle ways. My intestines have made up with my abdomen & brain, and now they are friends again, and my tummy wants to eat all sorts of delicious solid food! Yay!

Most recently (ie: the month of December!), I’ve been feeling super ‘low’ (a feeling I usually associate with the flu, low white blood cells/neutrophils, low thyroid function), and despite lowered blood counts, nothing could perk me up (well, except for chocolate! In between 3 choir concerts (complete with dress rehearsals), and other such seasonal madness, I had doctor appointments, and spent more and more time sleeping (or shall I say, resting? Because really I just lie there pretending I’m asleep, just like I did when I was little and my parents would come check on me. Nothing is changed I guess!). Getting up late. Very late. Even for my regular sick. I knew something was wrong. I knew this much ‘ouch’ had to signal something. My abdomen was feeling fickle too, my pancreas occasionally sending a little ‘SOS’ message after I’d eat fatty foods, a feeling like a knives in my bellybutton as payment. There were many days of non-solid food, or just purees, to appease the pancreatic gods :P. But I digress, as I am wont to do. I’m a wordsmith, and usually find an excess of adjectives and conjunctions in my writing, but even still in has been ages since I’ve written (well, except in my head!)…since I’ve had the energy, or the will to write.

Turns out my PICC line is infected. Oh joy! Oh bliss! Happy Christmas & New Years, Nicole. The good news was, there will be no hospital sleep-overs this year (I mean, it’s only 4+ hours til the new year…surely I can count this year as hospital stay-over-free.). My PICC line has chosen to be very dramatic, and painfully swollen, and most exciting of all….oozing green fluid! Oh boy! That’s a new trick. This PICC is a tank. A beautiful purple and blue silicone tank. It’s been hanging 15 cm outside my body for over 2 years, with NO problems. My previous few picc lines lasted between a few days to 6 months (the latter being the average). So after a dose of IV Rocephin at the ER, I was given oral Keflex to keep the green gunk at bay. Sometimes, a visit to the ER can feel like you’ve gone to a wild party and get to take home a goodie-cum-barf bag from the pharmacy: it’s so noisy in there my head is ringing, a strange alcohol smell clings to me, I feel a little germ-y being in such close proximity to so many people, and usually when we get in the car to go home I’m exhausted, and feeling crappier than when I arrived. And I’m going to need a snack….ASAP.

Day 2 of the oral meds I was feeling much better (not so achy) and I could knit again (I didn’t touch my knitting for a few DAYS if you can imagine the horror of that). Today is the 4th day I think, and my arm goo was cultured to see what sort of lab-experiment is going on in that nasty lump under my skin. Gross. But I’m feeling better. Better than I’ve felt in a month or so. Which tells me this infection has probably been bogging down my immune system for while. I knew I was sick, but I was so sure it was anything but my PICC line. I should have known that this blah feeling was likely after all my Port-o-Cath infection adventures.

The good news is I’m on the mend, I still have my PICC line (but it might get pulled if this Keflex doesn’t work some voodoo antibiotic magic soon!), and I’m feeling crafty once more. Onward, dear friends. I’m headed onward.

xox

(I’m typing so darn quickly because I want to play Scrabble! And Knit! I must be feeling more chipper!!)

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Just a phase

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.

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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.

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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 :).

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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 🙂

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!

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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
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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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Rolling on the Edge


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
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Native Foods, a Natural 1st Pick

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.
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Record Line

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!

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