The Onomatopoeic Procedure

Today- well gosh, its now yesterday!- was a very...new. And different. The kind of day you hope you only get once, lest it'd ruin the memory.

I'm in California. Stereotypically, it was sunny today, and I barely needed a sweater. We went on a wonderful outing, and spent some time at a doctors office. A doctor of vein related thingys (okay...there is  a science word I could insert here, only I've clean forgotten it. Blast.), who was very nice. And on time (woah bear.).

It went well! I should start by saying that. The proof is in that I am writing this now! The procedure is simple enough. Wash wash. Snip snip. Push push. Thread thread. Glue-a-dee Glue. See, not so bad?

I had to have an IV in. I'm totally pro at dealing with this now. We can count pinpricks, if you like. Just two, tiny little bruises on the back of my hand, bringing to mind the bite of a little snake. And hardly a mark in the crook of my arm, so little so that it looks like a faint scar! Kodos to her, hunh? Drip drip.- I forgot that in the above onomatopoeic poem- a little saline, and some numbing stuff.

My chest looks GROSS. Not gonna lie. I miss the good ol' days when it was just me, no plastic and cuts and such. The top incision is tiny, half-inch. I wonder what it feels like, cutting through skin with a scalpel? It makes my little waterproof shell and stretchy covering seem rather flimsy and useless, rather like the first drops of rain ripping wholes in an umbrella. Anyways, through this first little incision, I think they slide a little string/tube/wire/whatever down the vein they've found, and down. I don't really know why. Ask a grownup. Now, once they've done whatever it is they've done with that, they make the 'cut'. Its about an inch and a half, give or take a bit of my skin, and that is where it goes. As it is now in me, I suddenly feel awkward talking about it. My little new plastic bit (I'm slowly being bought out and replaced!). Its about the size of a quarter, only round, like those bouncy balls you get out of quarter vending machines in the antechamber of malls. They have to push  it, and less than and inch from the incision. That is very uncomfortable. Force of that magnitude had yet to be felt by that part of my body. Ow. Quite impressive force I might add!

 It feels big under my skin, which is currently stretching to keep up with the new thing. You can feel it from the outside. A ball. A lump. Under the skin. Above 2 thin burgundy lines. Surrounded by a hardened purple tinged layer, which is like skin glue, to hold the skin together. It was stitched, too. Neatly.

Its sensitive. To touch. Or tense my chest muscles. My heart feels huge in my chest, as I consciously will it to beat a little more to the left, farther from the new bits.

Oh I'm on a lot of pain meds. Oh I'm in a lot of pain (generally. today was a bad day all round). So I may not be making the words go together nicely. I took pictures of the wound. I think it is better to have that sort of thing facing you. If I don't look at it, it will be the monster creeping under the bed, the dark shadow in the night, the blackness of midnight, and it will be magnified and blown out of proportion. Everything looks better in the light. I'm debating whether or not to post the pictures. I'm thinking, well, on one hand, if you have to get a port in, maybe you'd like to know? Maybe it would help to see? If it were me, I'd want to know. Its better out there, than dark and wild hidden.

If you are going to get a Port in, know that if you are anxious about it, about the unknown, that it is not as bad as it seems. And I also know that that doesn't help. But, Lidocaine is greeaattt. Yah, it hurts a little after...no...actually it is more just uncomfortable. It feels awkward and unnatural, but damn straight it is!!

It was really hard for me to be able to face this. Blood turns my stomach, even spilled tomato juice. I took this picture.

The truth hurts. It helps, & I'll take it.

“Only by acceptance of the past, can you alter it.”

~T.S. Eliot

Break Things

I'm in California. I have arrived. I actually thought I'd just curl up on the plane and stay there, travel the world on a Unite Express. Hopefully they were headed for the tropics. Somewhere where the sun blots out all the shadows, and tans excellently.

I was exhausted when I woke up this morning, which never bodes well for a busy day.

I had to transfer so many times today. House. Car. Out of Car. Bathroom. Airport Chair. Aisle Chair. Seat. Walk to the Bathroom. Back. Aisle Chair. Wheelchair. Car. Car. House.  I may have missed a few transfers there, but you get the general idea. Going up up up made me feel sick too, so nauseous. You know that feeling when you take of, and for a moment you get so heavy, before your weightless (it happens in elevators too)? That feeling drives me mad.

But we're in a hotel now. And its quiet now. And there is no moving. I feel so nervous about tomorrow. With a hand on my heart, I wonder what it will be like to have plastic under it, in just a few hours time. The idea makes me want to break things.

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.