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Archive of ‘drugs’ category

beach, cancer, carpe diem, changes, confusion, dad, doctors, drugs | 1 Comment

The hands holding my heart.

It was a beautiful day here. The kind of day that makes the East Coast jealous 😉. Blue sky. A freshness in the air, a hint of spring at the corners of flower beds. Summer is a sweet far thing.

Looking forward while reflecting back.

As the sun sets, I’m sitting on Willows beach. I’m mildly freezing but it’s worth it to see the sky fade from brightest blue to faint pastels, a hint of pink and orange touching the edges of the clouds that cling close to the land. I’m grateful it’s such a beautiful day. It makes everything better.We spent the afternoon at the hospital. My dad sleeps almost all the time. He isn’t in pain. That’s exactly what he wanted. We asked he be taken off the medications they were giving him, to turn off his pacemaker, and let him be. No subject has ever been taboo, and I’m grateful to have been able to discuss birth, death and miracles in between with my family, and mum and I are deeply respectful of those  wishes.  I want him to be at peace, with just his breath and heartbeat, and feeling the love, us at his side until the end of this wild journey that we had the privilege of sharing.
I feel like there are tight hands around my heart. A tight fist of panic and grief. It feels as though I can scarcely breathe. I worry what it will mean when the hands release, with a final sigh of breathe. The sound and smell of the ocean calmed me. Steady waves gently rolling in to cover the bare beach. I can control them no more than my fathers breaths, but I can observe and cherish each. Footprints track through the rocky beach, but the birds seem few, and the last dogs and people turn in. A part of me wants to lean closer to the waves, to listen to what they whisper, for them to wash over me and wash away this feeling. But this feeling is a reflection of a life lived with love. It is a beautiful reminder of how deeply we as humans are able to feel.

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I love the ocean.

I brought my dad a bouquet of flowers from the home garden. It’s a wild space, and beautiful for it. Lavender, Rosemary flowers, dandelions, heather, delicate weeds I have no name for. Dad loves to see my face light up when he gives me flowers, and it brought my heart solace to do the same for him, even if he sees them only in dreams, or catches a whif of Rosemary.

Thank you all so much for your beautiful words. It means the world to my mum and I. I’m so blessed to have been born to the parents I have, and feel such gratitude that they know my love, and see the joy they bring to my infinite moments. 💜

cancer, drugs, efforts, Elizabeth May, falling, family, fate, fiber art, first, friends, full day, hope | 1 Comment

Oh Hai.

Hi guys. I know, long time no talk. I feel a little awkward writing this, like when you run for the first time after taking a long break. It takes a little while to warm up, to remember the way words sound coming out of your mind with a click of keys. I keep hitting the backspace button…which is something I abhor. As you can probably tell. I’m a ‘stream of consciousness’ kind of girl. I don’t really know how to fill you in on all the things that have been happening in my life, or to explain why I stopped writing for awhile.

You know how when you’re reading a book, and you get an inkling as to where the story is heading. Foreshadowing. Or maybe you’re a hopeless romantic and you hope the girl ends up with the guy in the end, and the run off into the sunset, even though this is a post-apocalyptic zombie novel, and it’s looking like 90% likely that the said boy is possibly undergoing zombification, and you know in your heart it might not end that way. But you keep reading anyway. Hoping the ending would be satisfying, even if it turned out differently?

Writing about things that happen to you is kind of like that. But there are less zombies in my life, which I’m not sure is helping ;). I started this blog in 2008, when I needed something to keep me moving forward. That thing was words, that thing was things I didn’t remember doing, that thing was sharing all the myriad of wonders and pains and progress and fashioning all of that into hope. I wanted to be able to keep writing, and one day, I’d have a happy ending. I know how that ending will look. I see it so clearly. It ends with me quite literally walking off into the sunset, with health, with hope, and a future full of possibilities. So far I’m looking at 2/4, so not too shabby. But to be honest, this past year, which shall henceforth be known as the “year of the loud silence”, I was so ready for this chapter of my life to be over. I wanted to write a new story, a story about a girl going to university, and seeing the world, and taking up fucking jogging or whatever the kool kids are doing these days (okay, I know it’s not jogging…but I digress).

I wanted to be better the day I got sick. And the day after that. And every day for the past *8* years (oh, fuck. I haven’t written that out before. that’s scary).

When life throws you a curve ball, sometimes you have to shout “PLOT TWIST” and keep moving on. In an entirely new direction

So that’s why I’m writing again. Because I’m getting better, my body is taking it’s sweet time. It’s time for a change in perspective.

To stand on my shoulders, and look backwards, and stare through walls, and shake jars filled with wishes.

And now I have exactly 0 clues as to how I’m going to explain what has been happening. Sometimes a long intro of rambling helps but, nope. Okay, deep breath.

My dad has cancer.

Fuck.

I hate typing that. I hate the way those words go in the same sentence. They don’t belong. The way the present tense links my father to another terrible disease. On top of Lyme disease and other fun things like that. And because my father doesn’t do things by halves, he has two kinds of cancer that don’t really go together, like orange stripes and teal polka dots on the same bow tie [although, come to think of it, my quirky father just might think those patterns go swimmingly. you can see where I get my aesthetic from ;)]. I hate watching him suffer. The man has never taken a sick day from work in his life before this. I didn’t understand how terrible it is for my parents to watch me be so sick. I know now.

As usual, it took forever for him to be diagnosed. This seems to be a theme that’s developing. He was in hospital for 2 months, where amazing oncology nurses cared for him, and almost magically brought down the swelling in his leg, removed water from on his lungs, and removed part (all?) of the tumour on his calf. He’s home now, doing a better, and going in for round 4 of chemo later this week. There is wonderful supports in place for people who have cancer, so thankfully he’s being taken care of pretty well. Like the witch in Hansel and Gretel, I’m trying to fatten him up by cooking all sorts of yummy things – although we’re still working on the candy house. We’ve tried many gingerbread recipes, and none have yet been a satisfactory replacement for drywall ;).

I have 13% battery life here, and I know you all are going to think this is a total cop-out, but I think I’m going to need to explain about what I’ve done and where I’ve been in another post. I set out with the best of intentions to squeeze much amazingness into one post. I didn’t quite manage. Wasn’t from lack of trying. Zombies and gingerbread men and plot twists kept getting in the way…you see what I have to deal with!? C’est dans la lune!

The highlights? Singing in an amazing Young Adult choir. Going to the Hansa clinic (in Kansas!) for treatment. Doing my part to help Elizabeth May’s Lyme disease bill pass. Joining in the 25,000 Tuques project for refugees coming to Canada. Progressing to floor yoga! Cracking the perfect gluten-free vegan bread. Starting a shop for my hand-carded batts on Etsy. Knitting socks. Many socks. Visiting Finnerty Gardens in every season. Reading so many books, and trying to check out all the material at the library (I’m doing pretty well so far.). Preparing for my grade 9 piano exam, in which I will slay some Mozart, Bach and Debussy music. Connecting with amazing humans. [Whoa. This list is making me feel so grateful right now <3.]
…
I’ve been very exhausted lately. I know, shocking, right, but this is different. The kind of tired where breathing sometimes feels like quite enough to be doing for one day. Where your migraine-addled mind slows, and thoughts come in puffs of clouds, that vanish when you try to hard. And sometimes you say “Fuck it” and do everything even though your arms feel like they are going to fall off and you need to rest during the remains day. I cut back on some more strong pain meds, and surprise, wouldn’t you know, I’m in more pain now which is also exhausting, but the pain is lessening, for which I am so grateful.

But I’ve learned this year that I am stronger.  Stronger than the things that try to weaken me. Stronger than I knew. I learned I can take a punch; a victory; a set back; courage, and get back up and do it all again.

Get knocked down 7 times, get up 8.

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! ~

blood count, bloodtest, chills, doctors, drugs, not sticking your head in the sand, prescriptions, sadness and bloodtests | 4 Comments

“What Now?”

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.

drugs, home, lost, sick, time | 2 Comments

Stranger at Home

Its strange being home. Everyone asks me how my year has been and I have no answer but a generic ‘good’ and a wide, vacant smile. They say how much I must have missed the Island, and I give give a non-committal nod of the head and change the subject. It is hard, because until they mention the fact that I have been away, I feel like no time has passed at all…because now the seasons are different and I can only tell how much time has past by the fact that I have grown, and the little stickers on the back of the car. Its as though I’ve been transported to the future, and I can look at the newspaper of next year, and view the city a year ahead of schedule. If I was on more drugs, I’d think it was magic haa.

But I don’t like it. I’m so tired of this half-life; of the mind-numbing drugs and the time gaps and the even wider gaps between my old friends. I want to scream that this is enough already! I have proved that I can handle this, I have suffered and proved time and time again that I can handle this. I have been tested; haven’t I passed? Can’t I just be fixed now and go back to the way things were without many changes? Who am I screaming to…are they listening?

Where is that old life? Where does the time go? To a vacuum? Into a vault? A vault in our minds? How cruel that my own vault is empty of the present, that the time and the life are all gone. All spent. Where does the time go?

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