Lines Drawn

We went to ER the other day, so they could fix my PICC line, which had a tiny crack in it. Once it gets 'compromised', you are at risk of infection, which doesn't sound like too much fun to me. We waited in ER for close to 7 hours, waiting, waiting, waiting (I read ALOT) until finally we were able to see a physician. Ironically, it was the same physician who I saw in the summer when I had a really really high fever, the night I lost my memory. It was like a kick in the gut of recognition seeing him, but also I realized that this doctor would be just as unhelpful now and then. And, if you can believe it, his knowledge of Lyme disease had not increased over the year and a half since I'd discussed it with him. He told us, after all that waiting, that they simply could remove the line, but couldn't put another one in, because no physician would take responsibility for it. But I can't blame them; putting in a PICC line for a Lyme patient would be like waving the Red Flag in front of the giant, charging IDSA bull. For all the discomfort involved in putting IN the line, it didn't hurt at all to get it pulled. Well, no complaints about less pain!

Unfortunately, that means that we have to get the line put back in, in order for me to start my IV treatment again. Unfortunately, that means going to California to get it put in, the closest doctor to do that kind of work for a Lyme patient. Doubly unfortunately, I think I am going to have a 'PORT' put in. The world alone makes my stomach tighten and my heart quicken at the thought. If you don't know what a port is, I will try and describe it to you, although I probably won't do it justice *rolls eyes*. It is a small "bubble" (well I think it kinda looks like a drum, or a push-button, but thats just semantics) inserted UNDER the skin, usually on the right side, under the collar bone. And then a line is fed into the vein. Basically. It is a little minor surgery, which all and all doesn't sound too bad. The part that I find unappealing is the part that involves puncturing the "bubble" with a needle (gulp) and injecting the 'stuff' into you. This is the little snag. You see, just thinking and typing words like 'puncture' and 'needles' or ever 'stuff' makes me woozy. My head gets hots, and I feel a small trembling in my arms and legs, and I feel faint. So you can feel why the idea of a port, scares me. Yup, totally terrified of the idea. Yuck. Yick. Yeulch. So we'll wait and see. We're going to California next week to do 'this'. So wish me luck.
Yuck.

A Crack in the Line

Well...I have some good news and bad news. Now, personally, I'm the kind of girl that wants to hear the good first, because hearing it after sort of tarnishes it, don't you think.

The good news: I'm over my cold!!

The bad news: My Picc Line has sprung a leak! We just changed the dressing today, but when we went to flush the line with saline tonight, I ended up covered in it. You can pretty much put two and two together when the evidence is staring at you in the face. There is just a tiny little rip, above the clip, thank god no blood. I can't handle blood very well, not gonna lie. I'm writing this so I don't panic. I like being able to breath thank-you-very-much. The thought is poisonous...it seems into my stomach and chest, weighing heavily inside me. Just the idea of having to face them pulling out the line, and then putting it back in terrifies me. What scares me more, would be them refusing to put a new line in. Then what? I don't want to get cut afresh all over again. Been there, done that. It was fun and all of course, but really, certain experiences are best completed only once.

I think the plan is to get it 'change' tomorrow. Great. There's something to look forward too!

Kilts, Kousins, and Kantats!

I miss the smell of wet kilts! Can you imagine missing such an awful smell! The girls used to say they smelled like owl pellets, but having never smelled them before, I cannot say for sure. They picked up the phrase after some out-week trip, and the expression sort of stuck. To me it smells kind of like if sheep had been out in the rain... Actually, my kilt is one of the acrylics, so you don't have that 'wet-kilt' smell. Sitting out on the grass, running through mud puddles, climbing things...life is just one big opportunity for a mess!

All this talk of wet kilts, and today was actually the first day without rain in several weeks. My cousin, of course, was ecstatic that there was a little sun...shes been here for nearly 2 weeks, and we haven't had a nice day at all. There was SUN, real, bright and warm (sort of) in the sky, a blue tinge to the grey clouds that suggested that there might be a sky above them.

I went to choir today. My big outing of the day...twenty-five (exhausting) minutes of singing. I love choir...it feels just like old times. It feels like I spent ALOT of time in that choir room, but I guess we just had practice very often...and all of my good friends are also in choir! I love taking back a little part of my life, one of my favorite parts, actually. Our christmas concert is soon...so excited. At least I know most of the words to those songs!

I'm pretty tired today. I feel like my brain is a little swollen, pressing painfully against my skull at the back. Or maybe I got hit with a hammer.

Party

A few days ago, I had a little get-together for my birthday. I'd call it a party, only it was just for 2 hours, and there was very little 'party activities' involved. I had so much fun, but it was so exhausting, embarrassingly so. Pathetic. We sat in a circle (well a kidney shape really...once you get past kindergarden, 'circles' get more and more wacky shaped, I find) and we had pasta and cake and just talked and laughed...it was so nice to have all of those wonderful people in the same room. I miss them so much, I miss our old life; its like a physical pain sometimes.

Birthday!

The other day was my birthday.
Its infuriating. I am 17, but how? At last count, I was fifteen...how strange it is that I am two years older and yet I am not. It is a difficult thing to wrap my head around. The passage of time is always hard to wrap your head around...but especially if there is nothing to hold on to, no memories to cement the passing of time. I'm floating out in space without it.

I felt especially crappy that day. It felt like the Lyme bugs were doing it on purpose, ruining my day. Sometime the pain gets so bad that its hard to breathe.

Amy is here...my cousin from Ontario! She is so wonderful and it is amazing to have her here (love ya!). We're hopefully going to do some fun cousin things, just hang out have fun! They are currently making carrot cake (my favorite!). I am very excited.

Me vs. the other Me

I feel sick today...like thats supposed to surprise you, yes I know. It still is horrible, no matter how many days pass in this pain and tightness, I will never adapt fully to this lifestyle. I will never have to. Hopefully.

My joints are what hurts most now. I am on the rack. I can feel them, strapped down to boards with duct tape wrapped tightly around my thighs and knees, slowly being yanked, twisted, a giants hands trying to pull them apart. The burn. A twitch. Swollen. The tendons feel like they are frozen in fear, a false move and they will crack or snap clean. The knees trembling in a nauseating way, a sensation like small hands scraping out a more concave spot. The drills, always drilling, a burning, dull heat buzz-buzz-buzzzing away, that perks up in the joints, just when you call for a respite.

aside: (Wow. The adjectives are really flowing today.)

 It is a silent sort of battle between me and...a different part of me, I guess. It is a sort of pain that makes you want to scream nonsensical words, just to express the madness and confusion and pain inside. Nonsense is the only way to make sense of this sort of thing. It is the only thing to do, and the only rule that you mustn't break. It is a zillion times worse to give in. Honest. Silence is más mejor. 

It is dark already. I hate waking up and in a few hours it being dark...it makes me feel sort of turned inside out. Unnatural. We wake up to the sun and go to bed at night...why can't I do this too?

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!

A Second Opinion?

A few days ago we went to an Infectious Disease Doctor in Victoria.

I suddenly feel very confident that I can become a Doctor. Already I know much much more than a Paediatric Infectious Disease Doctor in the area of Lyme Disease.

Here's an interesting tid-bit about my 'sickness'....I'm not actually sick! Not with Lyme! Isn't that great news guys *rolls eyes*? Because I have a negative ELISA Lyme test (which is ridiculously inaccurate, and well known to be), I could not possibly have Lyme Disease. A diagnosis? : nothing yet. Interesting isn't it, that they can be so sure I DON'T have Lyme Disease, but have nothing else to offer me diagnosis wise. Hmmmm... highly suspicious, don't you think?

We just talked for awhile. She examined me, rather roughly I thought, for some patient who complained of extreme, overall body pain. Nothing.

We had the whole crew there, the four of us (Nancy, Chris and Dave)...I call it 'intimidation tactics' or 'prove-ers' in my head...but it didn't really work.

I was very exhausted afterwards. Its exhausting to be in excruciating pain.

Asleep at the Wheel

I am so tired today. When I was woken up this morning, I simply couldn't get up. I felt I could have slept all day, not peacefully, but simply lounged around in bed all day. Yah, that plan sort of fell through. Awake and still asleep. My bones have dissolved-or so it would seem- they aren't holding me up too well. I feel like overnight my brain has slowly melted and evaporated in my head. I sometimes wonder if they'd open up my head if this is not the case. I know your brain doesn't have feelings (like nerve feelings, of course) but I feel certain I can feel the pressure of my brain against my head. I know that is swollen, like I maybe hit it a few too many times against the hard floor of a bathroom, or maybe just falling on carpet did the trick. Could it be bruised from those times I hit it on the glass table, a wall, a desk when I fainted?

My brain is drunk, stoned, buzzed, utterly wasted, out to lunch- whatever - and then decides to drive, which obviously doesn't work out too well in its favour. The brains a train wreck. I train wrecked.

Why is it always when I think I am going down the right road, I suddenly, violently, veer off course and start heading downhill again. Downhill fast. Is there no right path, no even road, no pristine walkway with lighted signs? No wonder my journey has taken so long, what with me taking two steps forward and then one back.

Intent of Meetings

The last few days have been utterly exhausting. I hadn't the heart to write all this, I couldn't muster up the strength. Don't get the wrong impression and think that these days were bad, far from it. Highly enjoyable, yet totally exhausting and consuming, as most important and fun things are!!

A crew from CTV's W5 (for the Americans in the crowd, it is sort of like '20-20' or 'Dateline' I think...) came to our house to discuss my fave topic ever: Lyme Disease. I was obviously shocked and flattered that they actually wanted to talk to me. It was strange having all these...strangers in the house...filming, and talking to me like we know each other!? They were so nice, Jerry, Paula, Richard, Brian, and really good about the 'no-touch' rule, and the 'I-don't-remember' issues. We just talked for a while and laughed and did normal stuff. I was feeling incredibly shitty that day, its hard to hide sometimes.

My bones are on...fire. They are hot inside, but the sort of hot that feels so hot you can't tell whether or not it is fire or ice; do you know that feeling? Its like that. It feels like some little people are drum drumm drumming their fingers along my bones, my pulse magnified in my ears to a dull bass drum boom. I can crick and crack all the joints. Pain. I forget what it was like before the pain. Maybe there wasn't a time before. I worry that there wasn't.

I hope when people see the show, they will understand better what its like, and want the changes to be made. I hope this turns up the heat on the politicians, and makes them act, like SUPER quickly! Its a wild sort of dream, which you could compare to flying through the sky or being deep underwater as a fish in another wild sort of dream.

They went with us over to Seattle, on the Clipper (oh how much fun is that boat ride hunh?). It always feels like a long ride there, across the Strait, with the fast bumpbumpbummpp of the waves occasionally. People smile at sick kids when there is a camera in her face: its funny, more staring but more smiles. Such a price, hunh? I was pretty tired - to put it lightly - when we got to Seattle. Food, movies, shower, bed.

The next day we got up really early (YUCK!!) and went to Dr. Marra's office, just outside of Seattle. The crew was waiting, and so were the doctors. Dr. Harris was also there, from California! We waited a REALLY long time there. In total, we were at the office from 11-5, which is longer than I usually do ANYTHING (ha including sleep). We met a ton of other incredible patients of the doctors, and exchanged stories and shared sympathy. Its good to meet other sick people, although I of course wish that they weren't sick at all. The best part is knowing people who have gotten better and are getting on with their lives. Jealous.

The high points of the day were talking to people, and eating Thai dinner, and seeing the doctors. They make me feel sure I will get better, and am getting better. They are both so gentle, which makes a marked change from some of the other Canadian doctors I saw. They changed some of my drugs around, and of course my supplements. Switching is hard for a few days , till your body adjusts.

I'm so tired and fidgety today. Can't sit still. Can't focus. Sorry is this all gibberish?

I'm glad we're home. And so incredibly happy that CTV is bringing up the issue of Lyme disease!! Thank you guys so much! You were so wonderful to hang out with! I hope that finally people will listen up and listen well. I hope there is change.