Archive of ‘confusion’ category

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.


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. 💜

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.

The Gatekeepers Den

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

One Hundred and One’th

This is the big “101” post.

Wow. I’ve had over a 101 things to say about this. Its sort of daunting thinking about all those free-written words that I don’t remember. Its strange: I had things so say…I said them, but I have no idea what I said. It is a twisted feeling. I recognize my style and word choice, yet its like someones play a trick on me, taking my words and warping them into phrases and prose.
And its no where near the beginning of April.
My mind wanders today. A butterfly, my thoughts jump from flower to prickly shrubs, to Dogwood blossoms, and Venus Flytraps. Each thought zaps me with a painful pinch as I consider the past. I try not to. I must remember that now is the time that is worth the time. I must dedicate now to the rest of my life.
Why isn’t anything easy?
I met with Elaine and my teacher, Sally, at SIDES (a distance education program!). I also read my Lyme speech to my teacher which was fun!! We also sort of put together an IEP for me (individualized education program), which will help the other teachers help me by knowing what I need. Of course having no memory is a little snag I’ve been trying to get over, but I will share with you now my secret.
I’ve spent nearly all of my life in school, so don’t think that I am going to miss the end of it now. So close to the finish line, do you quit? No! You put on an extra burst of speed and cross the line. I am going to graduate….I only need a few more courses. I will graduate, and then, proud as punch, walk across the stage to receive my diploma. This is “THE PLAN”. A dream, really, but does it matter?
I met an incredible girl, Sara Marie, who is like my ‘Lyme Twin’. Seriously, its creeping me out. We have almost identical symptoms, and of course she understand completely about the complex issues that, quite frankly, no matter your education or ‘case studies’, you cannot conceive. The truth is in our pain, and it is very bonding! I’m so lucky to know her. Hopefully we will get better together. Under my ‘links’ section, there is a link to her blog. Please check it out! Spread the Word. Pass it ON!

Who Am I?

Its been busy, not in a rush-around-no-time-for-a-break, but busy for someone who’s done nothing for a good time longer than she cares to remember! I love it though, seeing everyone.

We go to the mall sometimes with friends…just look at stuff, laugh, be girls. We try on makeup in the department stores, and spray perfume at the Body Shop, but it doesn’t feel like it used to, hanging out.
I went to the park with one of my bestest friendS, and we took pictures and just chilled. It was so sunny, and we took beautiful pictures of Beacon Hill park, especially random ducks, and water scenes.
Went to a movie one night with a group of people, it was nice only I sat through the whole two and a half hours wondering:
A. where I was
B. who I was with
C. when can I get some more water or snacks!
D. where am I?
E. who is THAT actor?

and probably repeating those questions in my head over and over again. Very tedious.
I like going for tea, and just relaxing with some good quality caffine to keep me going. Or chocolate…that always helps.
They all seem so different. Their faces look older, they’re taller, bolder, louder than I remember. But then I remember they ARE older, which is very strange.

I’m different too. I guess through them, noticing how they’ve changed, I can appreciate how I am different too. I guess I’m too sick to see that I’m growing up too. I wish I didn’t have to miss the “best years of my life”, yet still live through them, if that makes sense. I guess I just want my old life back.

Who am I? Sometimes I wonder if I still know.

It’s so hard to wrap my head around…

I flat out just want to be home. I would give up on this (so easily) to be home and laugh on the beach and just get a hug and kiss. I want to be real and keep it real. I want to leave go of it all and just walk out on something that’s so wrapped around me that I just can shake it loose, not even dancing hardcore. 

I want to go AWOL.
I want to run.
It would be a relief.  
But I can’t just run away with a problem, because I’ve found that they somehow pack it up into your suitcase too and your in a new place with the same problems. You must fix the problem and change your mind or the problem will just follow you to the ends of the earth. 
I am being stalked. By something the majority of the people do not believe exist. Or not at least the way I’ve got it. And that is scary.
You should be scared. As cliche as it sounds, it could be you next. And you would have to face a world of doctors who dismiss you and make you out to be insane or suffering from something completely archaic. You’re alone and your up against an institution that is so well regarded. Generally. 
There is more Lyme cases than AIDS. 
I cannot give blood if I have AIDS or other infectious diseases, but I could be sicker than hell and walk into the Red Cross and pull up my left sleeve and say, “Go for it…oh and by the way, in case you want to know why the wheelchair and IV in the left crook of my arm, I have Lyme. My list of symptoms would blow you away and take a page and a bit of your paper there. But no worries, right? I can give blood, although I have an infectious, horrible disease that is transferrable via blood….oh like AID’s or it’s cousin syphilis. Right. But its cool. You are a non believer. And just like the Christians think, you will be proved wrong on judgement day or sooner.” 
Where did the medical take a turn and stop helping people? People like me who a falling downhill faster than those Olympic skiiers. Where did we go wrong? 
But more importantly, how are we gonna get back to good?
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